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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.
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!
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!
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.
‘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.
Disclosure
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!
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!
Postscript
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.
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.
I’ve just returned from Berlin, where I attended the ATTD Conference for a week of super busy meetings, information gathering, collaborations and advocacy. At every turn, people with diabetes (many attending after being awarded a #dedoc° voices scholarship) were discussing how community advocacy is key to driving change. I heard about remarkable efforts from people across the globe who are genuinely improving the lives of people with diabetes in their part of the world. And when anyone had a question, or asked for advice, people were only too happy to offer and share.
Right now, if you’re in Australia and live with diabetes, especially type 1 diabetes, you may have heard the kerfuffle about Novo Nordisk’s Fiasp being withdrawn from the PBS after Novo Nordisk made the decision to withdraw Fiasp. The Government can’t compel them to keep it listed.
So what now? Well, now is the time to rally the troops. Already, grassroots advocacy efforts by people in the Australian diabetes community (and friends across the globe thanks to the #dedoc° network) are making a lot of noise. There’s a petition (with over 6,000 signatures) and there have been blog posts. Social media groups are lighting up with comments and questions. This is how a groundswell starts.
You can also get political by reaching out to your local MP. I know that many people think that this is a daunting task, or believe that nothing will come of it. I counter that suggestion by pointing to any significant change in diabetes access in Australia. I’ve been in these trenches for decades now and know the effectiveness of people power. Community advocacy is often the starting point of rumblings that, combined with strong advocacy from diabetes organisations, leads to policy change. I can’t tell you how many letters I wrote back in the early 2000s before insulin pump consumables were on the NDSS. (I thought that the PM and health minister were going to take out restraining orders after I wrote to them both a couple of times each week for three years!) At one point, back in around 2002, I was invited to a meeting with Julia Gillard (in opposition at the time) who asked to speak with a group of diabetes advocates (did we even use that word then?) who had been regularly writing about the cost of pump therapy.
I also think of the incredible community efforts that lead to the Carers’ Allowance being changed back in 2010 so that the parents and carers of children continued to receive payments until their child was 16 years old, rather than being cut off when their child turned ten. Or the numerous letters I wrote, along with thousands of other people, to have CGM added to the Scheme. There have been other issues too – diabetes seems to mean one after another that needs attention.
Right now, the issue is Fiasp and you may be thinking about sending an email, but wondering where to start. Start with your story. Because only you can do that.
You can tell your story and write whatever you feel comfortable – your diabetes may vary and the way you advocate will too. I have some ideas I’m going to share below and I think they are worth considering when you are writing to your local MP. My philosophy is always to keep things short and sweet. I bring the heart with my story and add limited data to win over minds. Hearts and minds remains a central basis to my advocacy ideas. So, if you’re wondering where to start, here are some ideas that may help:
- They don’t know diabetes and don’t know details, so start with the basics and keep it to the point: I am writing about an issue affecting me as a person with diabetes and that issue is the withdrawal of Fiasp from the PBS. Fiasp is the only ultra-rapid insulin available in Australia and there is no comparable and easy swap to be made.
- Be clear about the issue: Fiasp is being withdrawn from the PBS. While it may be available on a private prescription this will make it too expensive for many people with diabetes, meaning a management option is being removed.
- Explain how that impacts you: As a person living with type 1 diabetes, I am required to take insulin every day. Fiasp is the insulin that works best for me and if I am no longer able to afford to use it due to it being removed from the PBS, my diabetes management will be negatively impacted.
- Be clear about your ask: I am asking for you to advise what the Government is doing to address this matter, and how it is working with Novo Nordisk to resolve the concerns of many people with diabetes who are worried we will no longer be able to afford the best treatment option for our diabetes.
Don’t ever believe that you are not going to be part of the movement that makes change. Just a minute in the Australian diabetes community right now is enough to see how a movement has already started. It’s organised and collaborative and the noise is already beyond a rumble. And you can add your voice.
Disclosure
I have worked in diabetes organisation for the last twenty-one years. Recently I joined the Global Advocacy Team at JDRF International as Director of Community Engagement and Communications and until earlier this year I was Head of Community and International Affairs at Diabetes Australia. My words on this blog are always my own and independent of my work and the organisations where I am working. My individual local and global advocacy efforts are in addition to my ‘day job’. I am also Global Head of Advocacy for ##dedoc°°.
Like clockwork, the beginning of February heralded a sea of red in every retail store, with cutesy cupid motives and love hearts adorning shop windows. Valentine’s Day was the next big merchandising opportunity and, friends, it’s time to buy up.
At the same time, the diabetes community also starts to be sprinkled with red – this time red roses. Because once again, it’s time for Spare a Rose, Save a Life. It’s the complete opposite of consumer culture. And it’s something that is very close to my heart.
This year marks ten years since Spare a Rose was first launched by a group of diabetes advocates from the US. The story has been told many times but it’s worth repeating, because it says a lot about this community. These advocates wanted to do something that supported others living with diabetes, specifically those in under-resourced counties. And so, Spare a Rose, Save a Child (now Spare a Rose, Save a Life) was created, with a vision to bring together the diabetes community, uniting in the collaborative goal of supporting those who need it.
The simple equation of ‘sparing’ one rose and donating the $5 saving to a diabetes charity was tangible. That face dollars provides insulin for a month. That’s how it has worked for ten years now. Close to one million dollars has been raised in that time, which is truly remarkable when you think about it. It’s people in the community reaching into our pockets to help make a change.
This year, donations are once again going directly to Insulin for Life, a charity that continues to support people with diabetes in countries where there is most need. Insulin for Life has been running for many years and their work is significant. Last year, as war broke out in Ukraine, the charity was able to rally their networks within days, getting critical diabetes supplies where they were most needed. That support continues, and a big part of that is due to the generosity of the diabetes community getting behind Spare a Rose for Ukraine.
As soon as the war started, the diabetes community were desperately looking at how to help and almost immediately, people dug deep. With $400,000 raised in months, so many in the community showed just how committed we are to focusing on others. That’s the diabetes community I know and love!
And so, this year – the tenth anniversary of Spare a Rose – we’re asking again for people to dig deep and help if they can. Leave egos at the door and do the simple thing of supporting community efforts by sharing links, encouraging others to learn about Spare a Rose and, where possible, donate. The only people who benefit from this campaign are people with diabetes who need it. By the community, for the community. Truly the best way to celebrate Valentine’s Day.
Here’s your Spare a Rose, Save a Life refresher for how it works. It’s super easy, and if you click on the image, it will take you directly to the donation page. (Donations are made directly to Insulin for Life.)
Postscript and disclaimer
I have been a community volunteer for the Spare a Rose campaign for a number of years, involved in promotion and communications. I’ve taken a step back this year (for a bucketload of reasons, including this), but am no less involved behind the scenes. I have just started a new job and much of the focus is supporting people with diabetes in low to middle income countries which means I’ll be supporting efforts of many different diabetes charities, including Insulin for Life and Life for a Child (previous charity partner of Spare a Rose), A4D, CDIC and others, as well as the brilliant community groups lead by advocates on the ground.
Diabetogenic 