Diabetogenic

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.

You (I) should probably rest

April 8, 2025 in Diabetes, Health, Hypo, Lows, Real life, Travel, Wellbeing | 5 comments

I’ve been unwell.

And so, I’ve had time to think. Mind you, I’ve found it difficult to form thoughts properly, thanks to the brain fog that is impacting my attention span and ability to think things through to a conclus…oh look! The leaves on the trees in the garden are changing. I should buy the last plums when I go to the fruit and veg shop, and bake a plum cake. That would be delici… Are mandarins in season yet? Ooh, a puppy!

Anyway, back to trying to focus on what I’ve been randomly and messily thinking about.

On my last day at ATTD in Amsterdam, I wound up with a very weird pain flare that meant I could barely move. I put two and two together, came up with the wrong answer and decided it was thanks to arthritis and spent the day before my flight desperately trying to sleep it off so I would be okay to navigate Schiphol Airport and get myself home. I did make it home, but not without wheelchair assistance at each airport, and in excruciating pain for the entire long trip home.

Turns out, it wasn’t arthritis. It also wasn’t diabetes, but that didn’t stop me from trying to connect non-existent dots.

The day before the paralysing pain flare, I woke at 3am with my Dex alarm wailing. I was low. Very low. For five hours. You know, one of those lows that just won’t quit. One of those lows that simply won’t respond to massive quantities of glucose. I ended up throwing up after force feeding myself jellybeans and guzzling juice from the minibar, which was all just lovely. (And yes – I realised I had some inhalable glucagon with me AFTER the fact … but in my low fog, forgot as I was just trying to stay alive with sugar.)

Of course, I was exhausted when I finally came back in range and felt like I’d been hit by a truck. But sure enough, I got up and had a frantic day at the conference centre, in meetings, giving talks and trying to appear functional while feeling absolutely wrecked.

The next day, when I woke up unable to move because I was in pain, I thought that perhaps it was a result of overdoing things the day before, when I should have perhaps taken the morning off to recover from the hypo and the exhaustion that came with it. But of course I didn’t. Because when have I ever taken time off for diabetes? One time I had an evening black out hypo in a park requiring paramedic attention and I was in at work at my desk by 8.30am the next day. Because why wouldn’t I be? My weird and illogical attitude is that if I was to take time off to recover every time diabetes doesn’t play nicely, I’d be taking hours off each week. No one has time for that. At least, I certainly don’t.

And how very messed up that thinking is. I realise that. And I know what I say to friends with diabetes who tell me about their particularly crappy hypos, or when diabetes is kicking their arse/ass: ‘Take the time and let your body rest,’ I’ll say. ‘You’ve just been dealt a pretty shitty blow to your body and mind. Don’t overdo it,’ I’ll remind them.

And what do they do? They don’t rest. They don’t listen to their body. They overdo it. It’s what we do.

It’s messed up and we keep doing it, even though we know better. Of course we know better: because we give good advice to others. But we then do that ridiculous thing where we think resilience is strength, where actually, resilience would be listening to what our bodies need and then doing it. We ignore symptoms and give ourselves imaginary gold stars for ‘pushing through’.

It took some weird virus that literally hampered my ability to walk for me to take time off work. Sleeping 20 hours a day was all I could manage. But you know what? I should have slept 20 hours the day after the five-hour low to recover too, but of course I didn’t.

Who am I trying to impress by soldiering on as though there’s nothing wrong? What am I trying to prove? Do I think we get extra points in some bizarre Hunger Games-like challenge? Is it that I worry what others will think of me if I say, ‘I need to stop for a bit’? Am I afraid of seeming weak? Lazy? Or am I – twenty-seven years later – trying to live up to the ‘diabetes doesn’t change anything’ line I was fed the day I was diagnosed, even though it changes everything?

I’ve been back home now for two weeks now and really just getting back to regular programming now. On Sunday I was able to stand up for long enough to bake a cake. That was a win. I also was able to walk to our local café – a five-minute walk away – but needed a lift home. Slowly, but definitely better.

I’m not pushing myself – partly because I can’t, but also because I refuse to and that is something that is very weird for me. I’m home this week instead of flying to Bangkok to speak at the IDF Congress – the first time I have ever cancelled a work trip. Usually I push through. Usually I suck it up and pretend all is fine. Because I drank the ‘diabetes-won’t-stop-me’ Kool Aid when instead, I should have recognised that there is no shame in stopping to rest. I need to be better and do better about this. And listen to the advice I would give everyone else. Permission to take time out for diabetes.

This post is dedicated to my darling friend and #dedoc° colleague Jean who also doesn’t know when to stop. Let this be a reminder to put down the Kool Aid!

Instagram story screenshot of me just before the #dedoc° symposium. I'm smiling and looking away from the camera. — Feeling good! Just before the #dedoc° symposium – a couple of days before feeling poorly.

So, what’s new with you?

February 17, 2025 in Health, Real life | 5 comments

Is it too late to say Happy New Year? Probably, but does anyone actually believe that social norms still exist in the world the way it is these days?

And so – happy New Year to you. I’ve been absent. Not that it’s important to acknowledge this. But I have been because headspace these days is non-existent because of (gesturing wildly) the world.

But anyway, here’s an update no one asked for, (actually not true – thanks to all the people who have reached out and asked):

I made a resolution. Happy to hear that many of you have made a similar one. Smart, smart people!

I also didn’t do things: I didn’t start some bullshit diet, because diet culture sucks and is harmful. I didn’t tell anyone what they should be eating, because no one needs that. I didn’t go away for the holidays, because I was so travel burned out that the last thing I wanted to do was jump on an aeroplane.

Instead, I read some great books (Amor Towles, Jhumpa Lahiri, Paul Auster’s final words) and read some not-so-great books (Stanley Tucci – I adore you, but your latest book could have stayed as a personal diary and not been published, mate). Walked lots. Sat outside in cafes drinking barrel-loads of iced coffee. Saw some movies and binge-watched some TV shows (do we need to talk about Apple Cider Vinegar? Yes, yes we do.)

And I spent a lot of time complaining about my hands. My sore, achy, stiff, stupid hands.

I now have arthritis. Is it because I am old? Or maybe just because I collect health conditions? Is it psoriatic arthritis or is it osteoarthritis? (Probably both.) Does it have anything to do with perimenopause? Is Mercury in retrograde? Did I walk under a ladder? Whatever the reason, it sucks. And it hurts.

This diagnosis actually came last year, so I don’t really get to blame 2025 for it. It started in September. One day, I didn’t have pain in my fingers. And then I did. I spent the whole time I was in NY for the UNGA last year noticing that a lot of the time I moved my index fingers I felt a little twinge. Then the twinge moved to other fingers. By the time I was on the plane home there was pain any time I moved my hands. And even when I didn’t. So pretty much all the time.

These are the hands that type words, make divine cakes and pastries, roll out pasta dough, turn the pages of books, hold onto my loved ones, grasp microphones on conference stages and in media opportunities, press down on cutters as I shape biscuit dough, hold the cups containing the coffee that sees me through the day, doom-scroll through the latest update in the cesspit of the world, tickle the tummies of our dogs, pat the top of the head of our cat, point out the specific pasticcino at the pasticceria I want to eat, stir pots of delicious soups and sugo on the stovetop, tap out snappy responses to misogynists on the internet, are waved around as I talk… And all of these things cause pain. All of them.

Here’s something about me: I don’t deal well with pain. I had a little cry in my GP’s office at the end of last year. I cried because there isn’t something I can do to just fix this. Here’s the list of things I read that I should do to help improve arthritis pain: be a ‘healthy’ weight (because diet culture and we’re led to (falsely) believe that people who live in smaller bodies are always perfectly well. Bullshit), stop smoking, limit alcohol, eat healthily, walk and be active. I can’t start to do those things because I already tick each and every box. So what I am supposed to do? Sure, my activity involves little more than walking, but I do get in close to if not 10,000 steps a day, so I’m not completely sedentary.

I’m whingy about it all because the pain is always there, and I don’t get a break. And diabetes is always there, and I don’t get a break. And anxiety is always there, and I don’t get a break. Honestly, I’d take the pain not being there and keep the others any day.

While I wait to see a rheumatologist, I am doing some things that may be easing the pain a little. I say ‘may’ because I don’t really know, and I don’t want to stop them in case it makes it worse. And I spend a lot of time annoying people by telling them my hands hurt. (Don’t believe me – see the 800 words in this blog post – thanks for reading!)

I know the world doesn’t work this way, but sometimes I think it would be nice if those of us already dealing with a shedload of health conditions could sit things out for a bit. By ‘things’ I mean new diagnoses. That would be fair, wouldn’t it? I don’t really want to add another health professional to my contacts list and dedicate more time in my calendar for regular check-ups. And I don’t want to have to learn the lingo of a new health condition, while training a new HCP to understand the way I like to be treated. I don’t really want to have to give more money to the pharmacist for more drugs. I don’t really want to use more emotional bandwidth worrying and thinking about what this means long term. I don’t want to think about being in pain all the time. I also don’t want to wind up not being able to wear the beautiful rings I own, and feel free to call me shallow while I completely ignore you.

And so, that’s where I am right here and now. A mostly gentle start to the year. And sore hands. Very, very sore hands.

Sore hands making gnocchi

Another year of empty vases

February 14, 2025 in #SpareARose | 1 comment

Today, just as always on 14 February, my favourite vases are empty. It’s not that we forgot Valentine’s Day. It’s because in our house, it’s Spare a Rose Day.

The annual Spare a Rose, Save a Life campaign is about turning love (or lust, or ‘I kinda like you’) in action. Instead of giving flowers, we donate to the campaign that was founded in diabetes community advocacy to provide support to people diagnosed with diabetes in under-resourced settings. The equation has remained the same since the campaign started over ten years ago: for each rose we forgo, insulin is supplied for a month to a person with diabetes. $5 for one month. $60 for a whole year.

All donations are made directly to Insulin for Life , an organisation doing vital, lifesaving work across the globe. Every cent counts and goes towards saving the lives of people with diabetes.

It’s a really easy choice for us. Because no one chooses to live with diabetes. And no one chooses to live in a place where a diabetes diagnosis is a death sentence.

Since 2013, our remarkable diabetes community has measured love not by the roses we send, but rather by the ones we don’t. A single rose might fade in a few days, but the impact of sparing one, and making a small donation can be life saving.

If you can, please Spare a Rose today. Just $5 can save a life.

Health literacy in the age of health misinformation

February 13, 2025 in Advocacy, Awareness, Communication, Community, Diabetes, Health, Real life, Wellbeing | Leave a comment

When the clock ticked over into 2025, I had no intention of even considering coming up with New Year’s resolutions that would shape my new year. But with all that is going on in the world, I’ve given myself permission to reconsider and do all I can to stick to it. And I’m encouraging everyone I know to make the same resolution.

And that resolution is to do a health literacy check-up and to actively pushback against misinformation. There has never been a time when being health literate is more important. I thought that during the COVID years as we received a daily onslaught of misinformation about vaccines, bogus treatments (bleach, anyone?), outright lies (“it’s just a cold”) and conspiracy theories (“BigVax is behind it all”). But how naïve I was. Those days seems like just a warm-up for what is happening today.

I’m in Australia, but I don’t for one moment think we are immune to the madness sweeping the world. But if you are shaking your head and laughing a little when RFK Jr spews his anti-vax, anti-fluoride, anti-science agenda, or Dr Oz uses his latest pseudoscience claim as the foundation for whatever supplement he is selling, you’re not grasping the seriousness of what is going on. Before we Aussies get too smug, we should remember our own backyard isn’t devoid of charlatans, and it’s only a matter of time before someone like Pete Evans is taken seriously in public health discussions. Think I’m over-reacting? He already made a run for the senate. How long before a conservative party sweeps him into their fold?

I think it’s safe to say that we have moved beyond this sort of misinformation being a fringe issue amongst ‘crunchy’ parents, trad wives and ‘wellness’ influencers. And Gwyneth Paltrow.

Health misinformation is deliberate and it’s mainstream, and protecting yourself against it isn’t optional – it’s essential.

Up until now there have been guardrails in place to protect public health. Boards and regulatory agencies have existed to ensure medical safety and provide us with confidence that there are processes in place to determine the safety of drugs, devices, healthcare programs. Guidelines are based on robust and rigorous research and are developed using evidence and expert consensus. (Side bar: Have people with lived experience been involved in these practises? Absolutely not enough. Could this be better? Absolutely yes.)

Critical thinkers understand that science is not static. We understand that science changes as evidence evolves. We also understand that we don’t have to follow guidelines blindly. We should understand and consider them. And then use them to make informed health choices. I repeatedly say this to anyone who questions off label healthcare (my favourite kind of healthcare!): ‘I understand guidelines and learn the rules so I can break them safely’. That’s what being health literate does – it gives me an understanding of risks and benefits to make decisions about my health and what works best for me. And it gives me confidence to spot and push back on misinformation.

Critical thinkers also know that questioning medical advice is not the same as embracing conspiracy theories. It doesn’t mean throwing the baby out with the bathwater as you hastily reject modern medicine in favour of snake oil salespeople. It certainly doesn’t mean denying the effectiveness of a vaccines. And it doesn’t mean trusting Instagram wellness influencers.

More than ever, now is the time to do some questioning – to question who is spreading health information and consider their motives. What are they selling? (Case in point: Jessie Inchauspe who offensively calls herself ‘Glucose Goddess’ while selling her ridiculous ‘Anti Spike’ rubbish as she spreads fear about perfectly normal glucose fluctuations in people without diabetes). And a question that right now should be front of everyone’s mind: What power grab is behind the way someone is positioning themselves as an oracle of health information?

This post is about health literacy in general, but because this blog is called ‘Diabetogenic’ and I have diabetes, most people reading will be directly impacted by diabetes. And if there is any silver lining in this shitshow, it’s this: We’ve been dealing with health misinformation about our condition for decades, so in some ways, we’re probably ahead of the curve. We’ve had to wade through the myriad cures and magic therapies, the serums and pseudo-therapies. And the cinnamon – so much cinnamon! We’ve been standing up for science, challenging misinformation, and ensuring that diabetes health therapies are based on evidence, not fairytales. We’ve expected truth in our healthcare. It’s seemed the normal thing to do. Now it feels like a radical act to be a critical thinker.

We are a crucial point because health is being weaponised more than ever. Someone told me the other day that my lane is diabetes and health, and I should leave politics out of it. It’s laughable (and terrifying) to think that anyone doesn’t understand that health is political. It always has been. And even more so right now. We are seeing in real time political figures (and rich white men who own electric car companies) weaponise health misinformation for their own agendas, and scarily people are listening to them. They are elevating unqualified voices and aligning with conspiracy theorists, giving dangerous misinformation legitimacy. (And if you think that it’s all eerily familiar, you’re right. It’s already happened with climate change.)

Your radical act is to be smarter, to be more critical, to question sources and motives; follow reputable sources, don’t share viral posts before fact checking (Snopes is super useful here). Don’t reject credible advice and information in favour of conspiracy theories. Stack your bookshelves with books by qualified experts (I’d recommend starting with Jen Gunter’s holy trinity – The Vagina Bible, The Menopause Manifest and Blood and Emma Becket’s You Are More Than What You Eat), including lived experience experts who base their healthcare on legitimate evidence. Follow diabetes organisations like Breakthrough T1D (JDRF in Australia) for research updates and community efforts and be smart about which community-based groups you join. If moderators are not calling out health misinformation, I’d be questioning just how the group is contributing to diabetes wellbeing.

We know knowledge is power. But that knowledge base has to be grounded in fact, not fiction. Health literacy is critical because misinformation isn’t going anywhere, and neither are the people pushing it for profit and power. My resolution is to sharpen my critical thinking skills, ask questions, and refuse to let bad science set us backwards and cast a dark shadow over the health landscape. Who knew something so fundamental could be such a radical act?

I did ask them how…
Colour me unsurprised they couldn’t back up their claim with evidence.

The problem with Ozempic discussions in Oz

December 19, 2024 in Advocacy, Awareness, Health | 1 comment

The TGA has, once again, advised that Ozempic shortages in Australia are ongoing and in their brief statement they say this:

Sounds easy enough and it would be if only the issue of Ozempic prescribing was black and white and supremely simple which, sadly, it isn’t. There is confusion and frustration as people using Ozempic – both who do and don’t meet the criteria – find it difficult to maintain supply. People who don’t meet the criteria are sometimes being shamed for trying to access it and told that they are not deserving.

Firstly, let’s get the disclaimers out of the way: I am not a healthcare professional. I am not providing medical advice. I am not endorsing any sort of therapy or treatment (on- or off-label.) I am a person with T1D who is inherently interested in access to technologies and medicines that make our lives better. And I am interested (and believe) in off-label use of technologies and drugs because my diabetes life and overall health have been greatly improved by using different therapies off label. Also, in case you need a reminder, pretty much all people with diabetes behave off label in some ways, and if you don’t believe me, just ask someone with diabetes when they last changed their lancet.

And a little reminder that I don’t work for any Australian-based diabetes organisations, so this is not in any way aligned, or affiliated with what organisations are saying, or not saying. This is me, an Aussie punter with T1D, sharing my thoughts. (As I have done in the 2,000 plus posts on here already.)

Okay, with that out of the way, here are my thoughts – and my frustrations – with the latest on the Ozempic shortage saga.

In Australia (and in other places, but I live here and therefore am confined by Australian prescribing rules), the TGA has indicated Ozempic is use for the following (and excuse the language – the TGA needs me to come back and give them a little #LanguageMatters update):

‘the treatment of adults with insufficiently controlled type 2 diabetes mellitus as an adjunct to diet and exercise:

as monotherapy when metformin is not tolerated or contraindicated.
in addition to other medicinal products for the treatment of type 2 diabetes.’

For people who meet these criteria, Ozempic is prescribed using a PBS prescription which means that the cost will be $31.60 (or $7.30 for concession card holders) for one pen.

Does this mean that ONLY this cohort can have Ozempic prescribed for them? No, no it does not. Off label prescribing is not all that uncommon (not just for Ozempic, I’ll add). For people who do not meet the eligibility criteria, Ozempic is prescribed using a private prescription and the cost will be around $140 for one pen.

Is Ozempic being prescribed off-label? Of course it is. Increasingly so.

Anecdotally, I hear from many, many friends with T1D in Australia, but especially in the US, who are also using Ozempic in their diabetes management arsenal. I have heard dozens of talks at conferences in the last couple of years where T1D management is moving further and further from being gluco-centric with an approach that looks at drug combinations that address insulin resistance, lipids, blood pressure, heart and kidney health. It makes sense. As people in higher income countries have access to highly sophisticated hybrid-closed loop systems which significantly increase our TIR, and have us easily reaching HbA1c targets, many of us are looking to see what adjunctive therapies can support our broader health. GLP-1s are shown to have CVD and kidney protective benefits – something that many people with T1D are keen to access. In a talk at the Australian Diabetes Congress this year, head of EASD, Professor Chantal Mathieu said: “These medications are organ-protecting agents”.

The TGA announcement fails to recognise in any way that Ozempic is being used for other purposes than weight loss, and that it can be beneficial to people with T1D.

But let’s look beyond my own T1D bias for just a moment. There are many people with T2D who don’t meet the criteria set out by the TGA, yet who benefit greatly from Ozempic. Not only have they been denied accessing the drug at the PBS price but are also being denied supply completely for not meeting the criteria. Yet, many fear if they stop using Ozempic, they will find themselves meeting the criteria because their glucose levels will go out of range. This cohort feels like they are in complete and utter limbo and not being supported to use the medication that is drastically improving their glucose numbers and their overall health. A quick look in any online diabetes group will see conversations about this – because they are happening every day.

And if we step out of the diabetes sphere, people living with obesity who have been told time and time again to lose weight to improve their health have found Ozempic to be hugely successful in addressing one of the modifiable risk factors of T2D. This is a prime example of damned if they do, damned if they don’t. This cohort is told to lose weight, but then the tools which support that are snatched away from them, and they are rapped over the knuckles for trying to access them.

I understand that there are shortages and with that, there will be priority groups. But completely ignoring that there are other groups who are benefitting from Ozempic and not even acknowledging them seems odd. As does ignoring the difficulties – including stigma, shame and judgement – that these groups are facing when it comes to trying to access medication that has been prescribed by their healthcare professionals. In fact, some might suggest it shows a glaring lack of understanding of community needs and experiences.

Postscript

I am aware that Wegovy is available in Australia and can be used by people for whom Ozempic is not indicated. Wegovy costs are at least double than Ozempic which means that it will be out of reach for people who are already being expected to pay private prescription prices for Ozempic.

It’s also perhaps worth mentioning that the use and endorsement of adjunctive therapies – including GLP-1s – in T1D is not new and is detailed in the Consensus report by the ADA and EASD about the management of adults with T1D. As is often the case, regulatory bodies are taking their time in catching up to medical consensus.

Not here for bias

October 22, 2024 in Advocacy, Awareness, Communication, Diabetes, Language, Social media, Stigma, Wellbeing, Women's health | 1 comment

Last week, at the ISPAD Meeting in Lisbon, I was lucky enough to catch up with remarkable diabetes advocate Jazz Sethi and together, we launched a new resource about #LanguageMatters and women with diabetes. Jazz and her team from Diabesties conceived this idea and worked with a number of women in the diabetes community to bring this resource to life and add it to the ever-growing stable of #LangaugeMatters resources. I was one of those women.

Screenshot of cover of Language MattHERs resource for women with diabetes — Have a read!

So, why do we need a specific document highlighting the challenges faced by women with diabetes, and how language can be used to help overcome these challenges?

Let’s talk about gender bias in healthcare.

Anyone who has even a mild interest in healthcare knows that gender bias is very real, and women do indeed face specific challenges. The situation is worse for women from different backgrounds, sexual orientations and gender identities.

This was the reason behind the International Diabetes Federation focusing World Diabetes Day activities on women and children back in 2017.

Here is just some of the information from that campaign, explaining issues faced by women:

As a result of socioeconomic conditions, girls & women with diabetes experience barriers in accessing cost-effective diabetes prevention, early detection, diagnosis, treatment & care, particularly in developing countries.

Socioeconomic inequalities expose women to the main risk factors of diabetes, including poor diet & nutrition, physical inactivity, tobacco consumption and harmful use of alcohol.

Stigmatisation & discrimination faced by PWD are particularly pronounced for girls & women, who carry a double burden of discrimination because of their health status & the inequalities perpetrated in male dominated societies.

These inequalities can discourage girls & women from seeking diagnosis and treatment, preventing them from achieving positive health outcomes.

Beyond diabetes, and more generally in the healthcare world, women’s health concerns are frequently denied, minimised, ignored or not believed. Women are gaslit into believing that symptoms are not real, pain is imagined and that we are overreacting. These attitudes can have serious consequences. Here’s just a sprinkling:

This year, findings of the Australian-first #EndGenderBias survey found 2 out of 3 women experience discrimination in healthcare.

A Danish study of 6.9 million people showed that diagnoses for diabetes came four-and-a-half years later for women than men; cancer is diagnosed in women 2.5 years after it is diagnosed in men.

This World Economic Forum article about the women’s health gap highlights how far more women than men are not diagnosed for common health conditions.

This McKinsey Report showed that when it comes to gender-specific health conditions, diagnosis rates differ. Eight out of ten women are undiagnosed with menopause, and six out of ten are undiagnosed with PCOS. Meanwhile, only three out of ten men with erectile dysfunction remain undiagnosed.

Want more? Okay, here’s something from the UK showing that women are underdiagnosed, undertreated and under-represented in clinical trials directed at management strategies for cardiovascular disease, making their results less applicable to this subset.

Pivoting back to diabetes, this from a Lancet editorial:

Compared with men, women with diabetes are disproportionately affected by depression and anxiety & have a lower quality of life, which can negatively affect attitudes towards self-management &, in turn, disease outcomes

Women with type 1 diabetes have a 40% higher excess risk of premature death than men with the disease, and those individuals with type 2 diabetes have up to 27% higher excess risk of stroke and 44% higher excess risk of coronary heart disease.

Women from high income countries are less likely than men to receive the care recommended by guidelines

And a recent study published out of Canada reported:

Women with diabetes may face additional challenges related to gender-based discrimination and its impact on depression symptoms

Stigma was more significantly perceived by women compared to men

None of this will be a surprise to anyone who is familiar with gender bias in medicine. Actually, none of this will be remotely surprising to anyone who has listened women share their experiences in healthcare.

And so, anything that can be done to address this is surely a good idea, right?

Well, IDF Europe thinks so! In this article, one of their recommendations for addressing gender equality in diabetes is: The development of specific approaches to diabetes prevention, education and care for women and girls. In other words, targeted, specific, tailored information is frequently needed to ensure that messages get through and issues are addressed.

Which brings us full circle to the #LanguageMatters and women with diabetes resource launched last week. A resource specifically for women with diabetes, by women diabetes. It identifies the issues and provides practical solutions to address them and shines a light on gender bias in diabetes care, asking that women are treated with respect and all our concerns are believed.

You’ll see that nowhere in this article have I denied that men with diabetes face challenges, or that men with diabetes could benefit from focused information and resources. And the new language resource for women doesn’t say that either. And yet, that was an accusation on the cesspit that is Twitter after a video was tweeted, where Jazz and I excitedly launched this new resource. Because ‘whataboutism’ is never far away.

Diabetes MattHERs has been widely shared on social media, with overwhelmingly positive responses. But here’s the kicker: the only backlash? Aimed at a woman. Men who shared it? Nothing but praise. Funny how that works. It’s almost as though there’s a different standard for women. Perhaps… I don’t know… could it be bias?

Photo of Renza and Jazz laughing. We are sitting down looking at each other. — If we didn’t laugh we’d cry.

Whatever the number

September 5, 2024 in Awareness, Diabetes | 1 comment

The accuracy of the ‘180 decisions a day’ stat is somewhat questionable. Once, a long time ago in diabetes land, a blog post from Stanford University claimed a study showed that people with diabetes make that many health-related decisions each day. And it stuck and became folklore. It gets thrown around a lot! I’ve used it. Whole diabetes awareness campaigns have been built around it (guilty! I’ve co-designed them). And I couldn’t start to count the number of times I’ve seen the stat flash up in a presentation slide deck.

But, where is the evidence behind this specific number? Who knows‽ It’s murky.

While it does matter, it kinda also doesn’t. Accuracy is important (and no one knows the importance of accuracy more than someone dosing insulin). But so is the framing of what the number tells us. It says that people with diabetes face so much each and every day of our lives and with that, we are forced to make many decisions that people without diabetes simply don’t have to consider. Whether it’s 180 extra decisions, 120 extra decisions, 50 extra decisions – the number is … extra.

And while we could count and keep a tally of the specific decisions we make each day – the decisions of what, when, where, why, how to do things that impact our diabetes – there are decisions that go beyond being counted. Like the constant, underlying decision we make every single minute of every single day.

Everyday we make the decision to live. We do the things, we take actions that mean that despite what has been thrown at us we decide – deliberately – to live. We choose to live. Sometimes, things get in the way that make that choice almost impossible – the expense of diabetes, the lack of access to care, tech, medication and support all make it more difficult. But despite that, every time we do something to manage our diabetes, to treat our diabetes, to think about our diabetes, we are making the decision to live with diabetes using whatever is available to us.

The privilege to not have to make these choices is not available to people with diabetes. And because it is just what we do, it becomes normalised and becomes part of the fabric of our everyday. But I think it is worth recognising. The effort of making the decisions that mean we choose our life over and over and over again is quite remarkable. We may not really know exactly how many decisions it is each day, but, really, who cares.

After all, diabetes is about more than numbers. We keep telling you that!

Whatever the number…it’s extra!

How to make it easier…

August 29, 2024 in Advocacy, Awareness, Communication, Diabetes | 1 comment

I’ve been wondering how different diabetes would be if all we needed to worry about was the actual tasks of doing diabetes. ‘All’ doesn’t sound right, because I know it would certainly still be a lot. Diabetes tasks are many and constant. But if the noise disappeared and with it all the other factors that made diabetes more difficult, how much easier would it be?

If the gatekeeping disappeared and we could have access to what we need without having to jump through hoops to prove ourselves worthy, wouldn’t that make it easier?

If we had access to the best technologies and drugs when we need them, and could change as we needed, wouldn’t that make it easier?

If the judgement disappeared and we weren’t worried about how others perceived our efforts, wouldn’t that make it easier?

If the stigma vanished and we weren’t concerned about what others thought about diabetes in general, or felt that they had the right to comment on our diabetes, wouldn’t that make it easier?

If the shame and the blame wasn’t there, and we didn’t have the fingers pointing to us for getting diabetes or our diabetes outcomes, wouldn’t that make it easier?

If scare tactics were no longer deployed and we weren’t constantly being warned about all the things that could go wrong and how, if they did, it was our fault, wouldn’t that make it easier

If the fear arousal disappeared along with the numbers warning us that diabetes increased our chances of getting everything bad in the world or that we were burdening the health system, wouldn’t that make it easier?

If the not believing disappeared and we were listening to and believed and respected, so we didn’t feel that we were begging for what is even just basic care, wouldn’t that make it easier?

If the minimising of how we felt and what we were experiencing stopped, wouldn’t that make it easier?

If the grading A1Cs disappeared, so we weren’t being told that we were failing diabetes, or acing it, or oscillating between the two, wouldn’t that make it easier?

If mental health care was diabetes care and diabetes care always included mental health care, wouldn’t that make it easier?

If the idea that someone needed to speak for us and ‘be our voice’ was replaced with people with diabetes being platformed and amplified instead of silenced, wouldn’t that make it easier?

If peer support was routinely encouraged and peer-led education was normalised, wouldn’t that make it easier?

If the language around diabetes fostered attitudes of care and support, rather than bias and battles, wouldn’t that make it easier?

If claims of community engagement were real instead of nothing more than window dressing, wouldn’t that make it easier?

If we traded in hope rather than doom, and didn’t position diabetes as a battle or never-ending exhausting fight, wouldn’t that make it easier?

Because as it stands, diabetes is hard enough, but all the other things make it even harder. But the good news is that these things are often simple enough to address, simple enough to remedy, simple enough to change.

I do wish that these were the things that were front of mind when strategies developed, campaigns designed, and policies changed. That’s actually an easy part. When people with diabetes drive the diabetes agenda, everything is better. And easier for us.

So, ask yourself, are you standing in the way of making it easier for us?