I live right near one of the busiest streets in inner Melbourne and Fridays are extra busy. This morning, I was walking quickly to grab a coffee, a mental checklist working through my mind of the things I needed to get done for work for the day. 

I was stopped at a light, waiting for green so I could cross. ‘Meeting in 45 mins to discuss the next project; review proposal that was sent this morning; reply to email about Melbourne Uni presentation; send bio and headshot for program for conference in August; amend flights for San Diego trip, call…. Wait. Am I low?’

The unmistakable urgent low alarm of my Dex snapped me out of my to-do list, and I pulled my phone from my pocket. My Dex line was straight, my number in range. I shook my head thinking I must have dreamed the blaring alarm. As I was shoving my phone away, I saw a woman next to me rummaging through their bag. The next second, she crouched down and turned its contents onto the footpath. 

‘Hey,’ I said quietly, knelt down so I was level with her. I handed over an unopened packet of Mentos. She looked at me, surprised. I smiled. And said, ‘I’ve done that very thing more times than I care to remember.’ I passed her a small purse and a couple of pieces of paper that escaped from the dumped bag debris. She thanked me and we stood up together. ‘Are you all okay?’ I asked. She nodded. ‘Yep, I’m okay. Thanks.’ 

The light changed and I set off, giving a little wave. ‘Wait,’ she called after me, breaking the Mentos packet in two and handing half to me. ‘Take this in case you need it?’ I shook my head. ‘You hold onto them; I’m nearly home. Hope the rest of your morning is hypo-free.’

I picked up my pace and turned down a paved laneway, and into a café. As I waited for my coffee, I thought about how that brief encounter was a snapshot of the invisible community of people with an invisible condition. Until, of course, it’s not. Community isn’t always apparent. It doesn’t have to be the coming together for face-to-face meetings, or long Twitter exchanges. Sometimes, it simply lies within fleeting moments of strength and vulnerability and solidarity that provide solace and remind us that there are others out there who truly get it. 

A large tree coered wirh beauorgip autumn laves in red and yellow  the bances of the tree are overhanging a blustone-paved laneway

My husband is a secondary school music teacher and it’s been fascinating hearing educators’ thoughts on using artificial intelligence (AI) tools in the classroom. I’ve generally heard two schools of thought about AI, such as ChatGPT. Some teachers identify how useful it can be and are excited about the myriad ways it can enhance education and support students’ learning in new and innovative ways; others see it as pure evil, signalling the end of education as we know it and will be exploited by pesky students. Thankfully, my husband is very firmly in the first group!

My daughter is a freshly minted university student, and of course, AI is front and centre of university faculty minds, with students receiving warnings about misusing the technology, and how assessors would be on the lookout for any assignments turned in that appear more ChatGPT and less CramGPT-AllNight. But again, it’s interested to hear about how some of her lecturers and tutors are using the technology to develop novel and engaging ways to learn. And students are finding ways to use AI tools to assess the work they are doing and pinpoint shortcomings to allow them to go back in and work on specific areas that might need attention. 

But where are we in diabetes? What are we thinking about how AI could be useful in diabetes education and support? The ADA’s Diabetes Care journal weighed into the issue with this article published recently. The article provided a generally balanced view of what AI could do when it comes to providing diabetes education. 

Some of the pitfalls noted include: inaccuracy in the information provided, (and limited updates on new evidence and developments) and the potential for presenting false information convincingly, leading to safety concerns due to factual inaccuracies. There is often a lack of nuance in differentiating insulin types and variation in blood glucose units. Obviously, it has a reliance on a general information database, not specific medical knowledge. There was also a comment about there being inconsideration for the needs and wishes of individuals (but then, I’m pretty sure some HCPs I’ve had to deal with could be accused of the same thing). The reliance at the end of almost every response to ‘consult your healthcare team’ is a helpful if people have access to such a team but could be problematic for those who don’t. The downsides it listed were fair, although I suspect most could be easily overcome.

And the advantages that were highlighted were also spot on, and included: increased access to information, and the provision of systematic, concise, well-organised responses, with clarity around any jargon used. The ability to augment basic levels of education and offer more detail if requested by the user means that people with diabetes can customise their education to suit their level of understanding, needs and interests and regional and cultural contexts, rather than be at the mercy of generic education models and information that is often all that is offered. Of course the fact that education can be on-demand – when and where people with diabetes want it – is hugely convenient! These certainly are all valuable and could address many of the frustrations experienced by people with diabetes when it comes to seeking and receiving diabetes education.

But there was one glaring omission in the advantages list. ChatGPT comes with neutrality and with that neutrality comes a lack of prejudice about diabetes and people with diabetes. It doesn’t judge and it doesn’t blame the person with diabetes either. At no time is ChatGPT going to accuse the person seeking education that they are lying about their glucose levels (yes, that happened to me), or imply they are in denial about their diabetes (yes, so did that), or suggest the person is simply not trying hard enough (yes, and that) or isn’t caring about their health (yep – on more than one occasion). AI bots in diabetes care, and health more widely, can be seen to create a supportive space where people can seek guidance without feeling self-conscious.

The fact that there is no emotion in an AI bot means that they come without the baggage of preconceived ideas and previous experience. And they come without human interaction, and yes, I realise that this is in direct contradiction with my frequent calls for HCPs to be more human and person-centred. 

Before any diabetes educators come at me for trying to do them out of a job, please know that’s absolutely not what this post is about. Rather, I’m trying to highlight what it is that AI offers that could overcome some of the barriers (and those barriers can be mighty, mighty difficult to overcome!) that are experienced by people with diabetes when it comes to diabetes education.

I don’t think it needs to be said that this is a conversation that is going to be had more and more. AI isn’t in the scary future of diabetes education; it’s here and now, and smart CDEs will be the ones who work out how it can be used to enhance their work and be added as an additional tool to support people with diabetes. In fact, I would be looking for health professionals who are actively embracing this sort of tech rather than expressing scepticism about it. 

Because here’s the thing: AI is going to put more control and power into the hands of people with diabetes. It’s already doing that and it’s only going to increase as AI models get smarter and can learn and adapt to each user, faster and more accurately. And this is going to mean less reliance on HCPs for aspects of diabetes care. But this is a great thing, in exactly the same way that diabetes tech such as home glucose monitoring, insulin pumps. CGM and automated insulin delivery have delivered similar outcomes. 

The way diabetes care is evolving is at a crossroads. Better diabetes-specific technology, better drugs, ever-growing peer-led innovation, learning and support, all augmented by AI. The potential to create opportunities to better support people with diabetes and enhance our care is huge. I’m not for a moment suggesting that AI is a substitute for human interaction, but it undoubtedly has benefits over traditional healthcare approaches and offers new dimensions of support, in ways that can be customised and more relevant for people with diabetes. And if, at the foundation of all this, is the opportunity to remove stigma and help people with diabetes feel less blamed and shamed for their condition, that is a massive win!

Cartoon of two people staring at a large computer. There is a printer that has produced sheet of paper with a stick drawing of a sad face. The caption is 'We've trained the AU art generator so well it now feels too insecure about its work to make any art'.

I woke up (at 4am thanks to a hypo, but that’s another story all together) and scrolled through a variety of social media feeds and, because I seem to follow a lot of diabetes-related pages and people, was bombarded with the below. And so, these are my very early morning musings, a stream of consciousness mess, the logic and rationality of which is most likely influenced by low blood sugar. (The typos, however, are all mine.) 

So, let me begin by saying that this is important work – of course it is. The DiRECT trial has really put the idea of diabetes remission on the research agenda, encouraging further research into the issue, provided another potential diabetes treatment option for people with type 2 diabetes, and supporting people with type 2 diabetes looking at this way of managing their diabetes. Choice. It’s a good thing!

Today we have some follow up data (after the initial two years of the trial), providing updates on how research participants are going. Again. It’s important research, and it is helping increase knowledge and understanding of type 2 diabetes. Good stuff!

But one of the things I am all about is accuracy in reporting and this, my friends, isn’t it.

I wasn’t going to even touch the heading of the article, because surely the inaccuracy of it doesn’t need highlighting at all, but let’s go there anyone. The DiRECT trial is researching people with type 2 diabetes, and it probably would be good to mention that. I guess that nugget is in the sub-heading, but it might be good to not relegate it there. 

But let’s look at that sub-heading. ‘Stay free of symptoms’ is an interesting thing to highlight when we know that in many cases, people with undiagnosed T2D don’t have any symptoms anyway. Surely focusing on what it means in terms of day-to-day life with diabetes (i.e. medication, monitoring requirements, daily burden of ‘doing diabetes’, frequency of HCP visits) would be more meaningful. 

Back to the heading and we have the word reverse which is pretty much incorrect in all ways possible. The word they’re looking for is remission. Why? Because even if the result from those in the study is that they don’t require diabetes meds, and their glucose levels are back in range, they still do have diabetes. 

I’m not a statistics person. Data hurts my head and numbers make me cry, and I get the complete and utter irony of saying that considering that I live with a condition that depends on me understanding data and numbers, but now is not the time to come at me and my 2.9mmol/l self. Please and thank you. 

But there is a number in this research that seems to be jumping out at me and it’s this number: 23%. Let me clarify (this is from the Diabetes UK press release): 23% of participants who were in remission from type 2 diabetes at two years in the original trial remained in remission at five years. 

It’s important to also point out that this isn’t 23% of the total people who started in the DiRECT trial five years ago – not all participants were in remission after two years. At two years, 36% remained in remission. Or 53 out of the original 149 research participants in the intervention group (plus a additional 5 people in the control group).

So that 23% is of 58 people who remain in remission now at five years. That’s 13 people. Or about 8% of the starting number. That’s a very different story to what is being presented in news stories, media releases and cross socials today, isn’t it?

And that matters. Big time. Because there is real danger that many people will read the media reports today and in their minds that will mean that remission from type 2 diabetes is a far more likely outcome than reality and is the likely outcome for everyone. 

I’m not here to argue whether remission is a thing or not – it is. FOR SOME PEOPLE with type 2 diabetes. Adding pieces to help understanding of the giant puzzle that is diabetes is brilliant for everyone. Research helps us do that. Sharing that research so that people living with diabetes better understand the options available and learn more about how our particular brand of diabetes works is gold!  

But I am here to argue that publishing grand sweeping statements about how to ‘reverse’ type 2 diabetes, or telling only part of the story about the research, without the necessary nuance, is inaccurate and will further stigmatise type 2 diabetes and those living with it, especially those who are not able to achieve remission of their condition. The very idea that they could be made to feel that they are not trying hard enough or that they have failed is not being sensationalist. 

The stigma associated with type 2 diabetes is considerable and everyone has a responsibility to making it better and not add to it. And surely an even heavier burden of that should fall to those who are working in diabetes. If my 4am, glucose-starved brain is able to grasp how stigmatising something like this could be to people with type 2 diabetes, then it should be glaringly obvious to anyone who has even a passing interest in the condition. 

Twenty-five years of diabetes. You bet that’s worth celebrating.

And I did, spending a couple of hours at a local Italian pasticceria with gorgeous family and friends, eating our way though pastries and drinking copious quantities of coffee. Is there a more perfect way for me to celebrate a quarter of a century – and over half my life – dealing with diabetes? I think not!

Photo of me holding a silver coin. The  coin has the number 25  stamped on it and I’m holding it out in front of me. I’m blurred in the background.

This commemorative coin was given to me by Jeff Hitchcock from Children with Diabetes. This is the organisation’s Journey Awards’.* What a fabulous recognition of the hard slog that is day-to-day life with diabetes. Of course, here in Australia there are Kellion medals, but these are not awarded until someone has lived with diabetes for 50 years. I love the idea of acknowledging years of diabetes along the way to that milestone, and am extraordinarily grateful to have this one on my dresser at home.

Because really, there is much to celebrate. Getting through the good, the bad, the ugly, the frustrating, the humorous, the wins, the losses, the CGM flat lines, the CGM rollercoasters, the times we nail a pizza bolus, the times we totally botch a rice bolus, the times we exercise and don’t have a crashing hypo, the hypos from out of nowhere, the stubborn highs that make no sense, the visits to HCPs that feel celebratory, the visits that make us feel like crap, the fears of the future and the present, the tech that works, the tech that makes things more difficult, the stigma, the desperation of wishing diabetes away, the horrible news reports, the crappy campaigns that position diabetes negatively and those of us living with it as hopeless, the great campaigns that get it right, the allies cheering us on. All of these things – all of them – form part of the whole that is me and my life with diabetes.

Happy diaversary to me! And thank you to the people along for the ride. How lucky I am to have their love and support in my life.

As for diabetes. I still despise it intensely. I still wish for a life without it. I still believe I deserve a cure. At the very least, I deserve days where diabetes is less and less present.

I am so forever and ever hopeful for that.

More diaversary musings










*More details of CWD’s Journey Awards can be found here. Please note that they are only shipped to US addresses due to postage costs.

There’s been quite a bit of discussion after yesterday’s post about a recent consultation I did with a creative agency looking to develop a campaign about diabetes-related complications. I try to be solutions oriented and offer ideas, rather than just swoop in and be critical, so with that in mind, I’ve put together a couple of checklists that may be of some assistance when thinking about ways to talk about complications.

Of course, as always, these are just my suggestions and others may completely disagree with them, or having more to add. But this is a start that can be considered, shared and built on. And it comes with the ever present reminder that people with diabetes deserve to see themselves represented in ways that don’t make us want to run for the hills or hide under the doona (duvet) and never come out. That’s always a really good place to start!

‘What would the ideal campaign about diabetes complications look like?’

What a loaded question, I thought. I was in a room full of creative consultants who wanted to have a chat with me about a new campaign they had been commissioned to develop. I felt like I was being interrogated. I was on one side of a huge table in a cavernous boardroom and opposite me, sat half a dozen consultants with digital notepads, dozens of questions, and eager, smiley looks on their faces. And very little idea of what living with diabetes is truly about, or just how fraught discussions about diabetes complications can be.

I sighed. I already had an idea of what their campaign would look like. I knew because more than two decades working as a diabetes advocate means I’ve seen a lot of it before. 

Well,’ I started circling back to their question. ‘Probably nothing like what you have on those storyboards over there’. I indicated to the easels that had been placed around the room, each holding a covered-over poster. The huge smiles hardened a little. 

Honestly, I have no idea why I get invited to these consultations. I make things very hard for the people on the other side of the table (or Zoom screen, or panel, or wherever these discussions take place).  

I suppose I get brought in because I am known for being pretty direct and have lots of experience. And I don’t care about being popular or pleasing people. There is rarely ambiguity in my comments, and I can get to the crux of issue very quickly. Plus, consulting means getting paid by the hour and I can sum things up in minutes rather than an afternoon of workshops, and that means they get me in and out of the door without needing to feed me. I think the industry term for it is getting more bang for their buck. 

I suggested that we start with a different question. And that question is this: ‘How do you feel when it is time for a diabetes complication screening’.

One of the consultants asked why that was a better question. I explained that it was important to understand just how people feel when it comes to discussions about complications and from there, learn how people feel when it’s time to be screened for them. 

‘The two go hand in hand. I mean, if you are going to highlight the scary details of diabetes complications, surely you understand that will translate into people not necessarily rushing to find out more details.’

I told them the story I’ve told hundreds of times before – the story of my diagnosis and the images I was shown to convey all the terrible things that my life had in store now. Twenty-five years later, dozens and dozens of screening checks behind me, and no significant complication diagnosis to date, and yet, the anxiety I feel when I know it’s time for me to get my kidneys screened, or my eyes checked sends me into a spiral of fret and worry that hasn’t diminished at all over time. In fact, if anything, it has increased because of the way that we are reminded that the longer we have diabetes, the more likely we are to get complications. There is no good news here!

But people aren’t getting checked. They know they should, and they don’t. And some don’t know they need to. Or even that there are complications,’ came the reply from the other side of the table. 

Now it was me whose face hardened. 

Let’s unpack that for a moment,’ I said. ‘You have just made a very judgemental statement about people with diabetes. I don’t do judgement in diabetes, but if you want to lay blame, where should it lie? If you’re telling me that people don’t know they need to get checked or that there are diabetes complications, whose fault is that?’

I waited. 

‘Blaming people or finding fault does nothing. That’s not going to help us here. You’ve been tasked to develop something that informs people with diabetes about complications – scary, terrifying, horrible, often painful – complications. Do you really want to open that discussion by blaming people?’ 

Yes, I know that not everyone with diabetes knows all about complications, and there genuinely are people out there who do not fully understand why screening is important, or what screening looks like. The spectrum of diabetes lived experience means there are people with a lot of knowledge and people with very little. But regardless of where people sit on that spectrum, complications must be spoken about with sensitivity and care. 

The covers came off the posters around the room, and I was right. I’d seen it all before. There were stats showing rates of complications. More stats of how much complications cost. More stats of how many people are not getting screened for complications. More stats showing how complications can be prevented if only people got screened. 

‘Thanks, I hate it,’ I thought to myself silently. 

I spent the next half an hour tearing to shreds everything on those storyboards. We talked about putting humanity into the campaign and remembering that people with diabetes are already dealing with a whole lot, and adding worry and mental burden is not the way to go. I reminded them that telling us again and again and again, over and over and over the awful things that will happen to us is counterproductive. It doesn’t motivate us. It doesn’t encourage us to connect with our healthcare team. And it certainly doesn’t enamour us to whoever it is behind the campaign. 

I wrapped my feedback in a bow and sent a summary email to the consultants the following day, emphatically pointing out that I am only one person with diabetes and that my comments shouldn’t be taken as gospel. Rather they should speak with lots of people with diabetes to get a sense of how many people feel. I urged them again to resist using scare tactics, or meaningless statistics. I reminded them that all aspects of the campaign – even those that might not be directed at people with diabetes – will be seen by us and we will be impacted by it. I asked that they centre people with diabetes in their work about diabetes. 

But mostly, I reminded that anything to do with complications has real implications for people with diabetes. What may be a jaunt in the circus of media and PR for creative agencies is our real life. And our real life is not a media stunt. 


I operate a freelance health consultancy. I was paid for this work because my expertise, just as the expertise of everyone with lived experience, is worth its weight in gold and we should be compensated (i.e. paid!) for it.  

Friday is fast approaching, folks. Don’t forget to fetch your fresh Fiasp prescription, Australian friends!

(A reminder: to continue to obtain Fiasp at the PBS cost, you need a prescription dated BEFORE 1 April.)

Hey, do you remember a couple of weeks ago when it was International Women’s Day and women got a cupcake (probably baked by a woman) and a breakfast (probably organised by a woman) and then we all agreed that gender equality didn’t need to be spoken about for another year?

Look, I know I sound cynical. But that’s only because I am. Every year at Diabetogenic, I write a post celebrating the incredible women working in diabetes. Mostly I centre diabetes advocates who are generally donating their time – and emotional labour – to power advocacy efforts and make change. And if you look back at the history of the DOC, you will see that the majority of the work has been by women in the community. (Don’t @ me with your ‘But I’m a bloke and I’ve done this’ commentary. It’s not the time for #NotAllMen.)

This year, I started to write something, and then stopped, and started again. And then stopped. Anyone who is a frequent visitor to this site or follows any aspects of my personal advocacy knows that I celebrate the incredible work done by grassroots and community advocates (many/most of whom are women) throughout the year and I didn’t want to buy into the ‘It’s-IWD-here-are-the-womens-now-it’s-back-to-the-misogyny-we-usually-deal-with’ crap that seems to be the aftermath of each and every IWD. 

So, I’m using today – this random day – to give a shout out to some of the great things going on that you may have seen, or you may have missed. These things are powered by women who, in most cases, are doing this as extra work on the side of their day jobs, and everything going on in their personal lives. But it’s undeniable that it’s this sort of stuff that is going on all the time, usually flying under the radar, but it’s making a difference to so many folks in the diabetes world.  

And so…

There is some remarkable work out of India where the Blue Circle Foundation continues to make a mark in diabetes advocacy. On IWD, a team of women from the Foundation conducted an awareness program for 200 women inmates in Yerwada Jail in Pune, India. This is part of their ongoing Project Gaia which creates safe spaces for women with diabetes. Snehal Nandagawli is just one of the women involved in this work. You can hear more from her at this week’s #dedoc° #docday°.

From the UK, Mel Stephenson-Gray has been a brilliant force in the diabetes community for a number of years. She recently launched a fabulous new Insta page celebrating and empowering women with diabetes. It’s called Diabetes Women’s Health Club and the information she’s been sharing (accompanied by gorgeous graphics) is brilliant. I loved the profiles of some of women who were groundbreaking pioneers in diabetes research. Go give the page a follow now!

Dawn Adams hasn’t managed to convince me that she is only one person because the sheer volume of the work she is doing is immense and she’s bloody everywhere. Dawn continues to blaze trails in her research and writings about diabetes and menopause (follow @MenopauseMither on Twitter for great information and support), has been featured in a number of Diabetes UK publications, spoke at the recent #dedoc° symposium at ATTD, and continues to be a daily support and mentor to people across the global diabetes community. I’ve barely scratched the surface with this list. Someone please send Dawn a coffee and cinnamon bun so she can sit down for 30 seconds and recharge her batteries!

Another woman who is a human powerhouse and obviously works 23 hours a day (lazily, she sleeps for an hour) is Jazz Sethi whose work with the Diabesties Foundation continues to multiply exponentially.  She’s also a brilliant speaker and gave an emotional talk at ATTD last month. Check out just some of what she is doing here (and stay tuned for something super exciting that we’ve been working on together!)

Also at the recent ATTD #dedoc° symposium, Hamidah Nabakka from the Sonia Nabeta Foundation captivated the packed-to-capacity room, sharing stories of children and young people living with diabetes in Africa. This was held on the first day of ATTD and for the rest of the week, I had people coming up to me and saying that it was their highlight of the whole conference. 

I’m getting to this a little late because it was started last year, but Niki Breslin started a brilliant Insta page to build community called ‘My Type of Family’ for anyone with diabetes who is planning and trying to conceive, pregnant, recently had a baby and parenting. There’s lots of great information and encouragement for the community with this page and definitely worth a follow!

I was so excited to see some artwork by Miss Diabetes from New Zealand make it across the ditch Melbourne in an IWD street art exhibition. Her comic ‘Women and Diabetes’ was on show in our city’s iconic Hosier Lane! Miss Diabetes’ diabetes advocacy is super well-known in the community thanks to her tireless efforts supporting Insulin4All efforts and with work she’s done with the WHO diabetes team. You can see the artwork here.

Anita Sabidi in Indonesia continues to drive and build community with her advocacy work that shine very bright lights on issues such as emotional wellbeing and mental health, and women’s health. Anita is a regular speaker about these important topics, and also leads a number of community initiatives supporting women with diabetes in Indonesia. She’s also speaking at #docday° this week.  

Dana Lewis never ceases to amaze. Last week she ran 100kms in a day, but unbelievably, it’s not her physical feats that make her name so well known in the diabetes world. It is, of course, her work in open source AID. Last month she gave two presentations at the Open Diabetes Closing Conference, and she has an upcoming session at the ADA Scientific Sessions in San Diego. On top of that, she continues to publish regularly and is a force for nothing but good! 

Ashley Ng from Australia has been documenting life with two gorgeous little girls on her blog, opening up about some of the more difficult aspects of parenting while living with diabetes. I love Ash’s candidness and honesty and am always grateful for her ability to be so raw, but also hopeful. Read and subscribe to her blog here.

These women are just a few of the many who continue to make our community tick and flourish. There work is not only meaningful on 8 March: it’s making a difference every, single day. The very idea that women and their achievements get just one day of real celebration (albeit while battling the calls of ‘where’s International Men’s Day?’) is in equal parts frustrating and insulting. I celebrate the incredible work that women spearhead all the time because I know that alongside that work, they are dealing with patriarchal attitudes that make their successes all the more remarkable. That deserves far more than a cupcake!


The UN theme for the day was DigitALL: Innovation and technology for gender equality, not the saccharine sweet ‘EmbraceEquity which means absolutely nothing and was created by some corporate machine that does nothing to advance equality in any way. So, if you spent IWD posting selfies of you hugging yourself, that’s great, but what did that really mean when it comes to advancing gender equality?

If you haven’t had a look at the website from the UN, it’s definitely worth it, even if it’s just to see the high-level details, one of which explains that online gender-based violence silences women and discourages their public participation. It may be odd to think this is a thing in the diabetes community when so much of what you see comes from women, but actually, it’s real. Harassment is a concern for many women, and I know of many women who have stopped sharing or locked down their accounts (permanently or temporarily), or deleted them completely, due to this harassment. I’m one of those women. This is something to be mindful of every day – not just a single day in March. 

I’m not alone in being fascinated by artificial intelligence and how it can be used in day-to-day life, including day-to-day life with diabetes. Every day there is more and more published about how it can be applied in healthcare and there’s a lot to be excited about.

Of course, it has its limitations. When I asked ChatGPT to manage my diabetes for the day, the response I got was disappointing:

I’m sorry, but as an AI language model, I’m not capable of managing your type 1 diabetes or any other medical conditions. Please note that managing diabetes requires careful monitoring of blood sugar levels, regular medication administration, and attention to dietary and physical activity habits, among other things.

Not really useful – and just a little patronising! – but I guess managing a chronic health condition that requires minute-by-minute consideration, frequent complicated mathematical calculations and constant monitoring is complex. If only there was some sort of technology that could automate aspects of diabetes and reduce its daily burden. Oh… wait!

But I wondered what ChatGPT might put together if I asked it about the importance of community and lived experience engagement in diabetes advocacy and here is what it said. (I’ve copied and pasted the exact response from my prompt, with my edits in italics.)

Prompt: Is it important to centre lived experience in diabetes advocacy efforts? Thank you!

Diabetes is a chronic illness (condition) that affects millions of people worldwide, and its impact on daily life is often underestimated. While medical professionals (and researchers) have made great strides in understanding and treating diabetes, the experiences of people with diabetes are often overlooked in discussions of the disease. (True, AI friend. True.) This is why centering lived experience in diabetes advocacy is so important. (This! A thousand times this!)

Lived experience refers to the unique perspective of an individual who has experienced a particular issue, such as diabetes. When it comes to diabetes advocacy, lived experience is critical for a number of reasons. Firstly, people with diabetes are the experts on their own experience. (Damn straight we’re experts! Louder for people in the back!) They understand the daily challenges and obstacles that come with managing this chronic illness (condition). By centering their experiences, we can gain valuable insights into what needs to change in the healthcare system and broader society to better support people with diabetes. (Twenty-one years of advocacy summarised in that last sentence!)

For example, someone with diabetes might be able to provide important feedback on the design of medical devices, such as insulin pumps or continuous glucose monitors. (Oh, hells yes!) They might be able to identify usability issues that would be missed by a team of engineers who do not have diabetes themselves. By incorporating the experiences of people with diabetes into the design process, medical devices can be made more user-friendly and better meet the needs of those who use them. (We can point to the brilliant folks who have developed open source AID systems to demonstrate this point! )

Secondly, centering lived experience in diabetes advocacy helps to promote empathy and understanding. When we hear firsthand accounts of what it’s like to live with diabetes, we are better able to put ourselves in someone else’s shoes and understand the challenges they face. This, in turn, can lead to more compassionate and effective care. By understanding the daily realities of life with diabetes, healthcare professionals can provide more personalized and patient-centered care. (Yes we can!)

Similarly, when policymakers hear from people with diabetes about the impact of policies on their lives, they are better able to make decisions that take into account the needs and experiences of those who will be affected. (I believe there might be a hashtag for this. Something like #NothingAboutUsWithoutUs) For example, if a policy change would make it more difficult for people with diabetes to access affordable insulin, those with lived experience could explain the real-world consequences of that change and advocate for alternative solutions. (Hello to the incredible community advocates who instantly busied themselves, organised, lobbied, donated their time and put in the hard yards to kick start advocacy efforts that resulted in a 6 month reprieve for Fiasp remaining on the PBS here in Australia!!)

Finally, centering lived experience in diabetes advocacy can help to reduce stigma and raise awareness. (Absolutely! Look at the amazing advocates who have been writing and speaking about stigma FOR YEARS, which resulted in it being put on the policy and research agenda!) Diabetes is often seen as a disease (condition) that can be managed with diet and exercise alone, which is not always the case (never ONLY diet and exercise – there’s a lot more to it!). By sharing their experiences, people with diabetes can help to dispel myths and misconceptions about the disease. They can also raise awareness about the emotional toll of living with a chronic illness (condition), including the fear and anxiety that can come with managing blood sugar levels. (YES! Effectively explaining the emotional toll or living with diabetes needs to come directly from those with lived experience. Cosplaying diabetes is a very poor substitute to hearing from those actually doing diabetes.)

In conclusion, centering lived experience in diabetes advocacy is essential for improving the lives of people with diabetes. (100%) By incorporating the perspectives of those who have firsthand experience with the disease (condition), we can gain valuable insights into what needs to change in the healthcare system and broader society to better support people with diabetes. We can also promote empathy, understanding, and awareness, ultimately leading to better care and improved outcomes for people with diabetes. So, let us listen (yes – do!) to those with lived experience and work together (and be led by PWD) to create a more inclusive and supportive world for people with diabetes.


ChatGPT managed to pull together the case for centring lived experience in diabetes advocacy in 30 seconds. This is thanks to decades of work from advocates from around the world who continue to live, sleep, eat and breathe the #NothingAboutUsWithoutUs mantra. And this is really promising to me, because it seems that if AI has learnt this is true, then there’s hope for everyone else out there to reach that point too!

Four weeks. That’s about how long ago it was that the first murmurings of Fiasp being withdrawn from the PBS were heard in the Australian diabetes community.

It’s been a pretty wild ride in those four weeks, hasn’t it? I never should be surprised at the dedication and never-say-die attitude of diabetes communities, but what we saw from the Australian community was next level! And it went beyond that, with Aussie advocates rallying our friends from overseas (hello #dedoc° Voices!) to amplify our efforts here. 

And today, news of a reprieve. Fiasp would be available on the PBS for another 6 months for anyone with a script dated prior to 1 April 2023. (That’s the catch – you need a script before that date, or you will have to pay the private prescription cost.)

This is a great result. It gives everyone with diabetes using Fiasp some breathing space to make plans for what happens if we need to change insulins. 

There are a lot of beautiful things about grassroots advocacy. Firstly, it can be incredibly responsive. It takes just one person to share, and the community response is often instantaneous. 

We saw that here, didn’t we. As soon as it was just a hint about what was going on with Fiasp, people with diabetes in Australia took to it. This was even before the Minister’s office was aware of what was happening! From a petition (amazing, Belinda!), blog posts and discussions in social media groups, to standing around conference exhibition halls (this is exactly what was going on at ATTD with Aussie advocates!) the momentum started and picked up speed. 

It is undeniable that the best results happen when everyone works together, and as I said in my post about this issue a couple of weeks ago, …Community advocacy is often the starting point of rumblings that, combined with strong advocacy from diabetes organisations, leads to policy change.

This is a dazzling example of exactly that! A community of all stakeholders coming together, led by community. Doesn’t THAT make you feel all warm and fuzzy? And today, people with diabetes have celebrated in great ways – the people who should be centred in this win for their efforts. This was my tweet about that earlier today:

Some final thoughts

Celebrate the win and cheer with other community advocates. I’ve loved seeing the commentary in online community groups today! Our celebrations are so meaningful because it is our fridges that were going to be bare of Fiasp if this didn’t come through!! 

I know it’s tempting to stockpile, but please don’t! There are 14,000 Australians using Fiasp and hopefully everyone who needs to get a script filled over the next six months will be able to do so effortlessly. Of course there is the human urge to make sure we don’t run out but remember that if you have a year’s supply in the fridge, that might mean someone can’t get their next week’s supply. 

This isn’t done yet! Six months is AWESOME but keep the pressure up with the grassroots efforts that worked this time. 

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