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.
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.
-End
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.
Is it really all that radical an idea to suggest that there is no one size fits all when it comes to people with diabetes and what they choose to eat? Surely any reasonably minded person would say that no one should be forced to follow a specific diet, in much the same way as no one should be told which diabetes tech they must use.
But in the last couple of weeks, and after a couple of different incidents, I’m realising that reasonable doesn’t play into the attitudes of many people when it comes to what can only be termed as diet wars. I don’t bait anyone with tweets about food. I really don’t. I’ve no interest in defending what I eat. It’s my business and mine alone.
My position is very clear on this, but I’ll state it again. I genuinely believe that people with diabetes should be able to eat the way they want. I also believe that it is incredibly privileged to get all preachy about what people should be eating when there is a lot that goes into how that decision is made. For some people, that decision is made for them in a lot of ways. It’s pretty ridiculous – and showing just how out of touch you are – to demand someone eat specific foods if they live in a food desert, can’t afford whatever they are being told to eat or if those foods are not culturally considered.
But let’s, just for a moment, pretend that we are living in some utopia, and everyone has access to, and can afford to buy, whatever food they choose to eat. We’ve taken out the factors that may make it difficult to afford and access the widest, freshest, healthiest variety of foods. Let’s now add to that and say that everyone is fully informed and has a high level of understanding about the different types of diets and earing plans available. This is as level a playing field as we can get.
Guess what? People will still make different choices and decide what works for them.
And that’s because there is no one way that works for every single person. That’s the bottom line. I think that’s a balanced starting point – understanding that not everyone is the same, not everyone wants to eat the same, and different things work for different people. That’s the way I think.
I want to make this position clear, because what comes next is perhaps not quite so generous.
After some pretty boring encounters in the online diet space, (I say boring, because haven’t we done this all before?), I decided to do something that I shouldn’t really do. But jet lag, too many long-haul flights on WIFI-enabled planes and, well, some sort of desire for self-sabotage, made me do a bit of a deep dive into the some of the people offering the more aggressive and downright nasty comments.
It will come as no surprise to anyone that the comments came from people who are very vocal about following a low carb diet because isn’t that where these comments usually come from? In my experience, the only people who have been critical of comments I’ve made online about food are those who are deep into the low carb community. I am not in any way tarring all those who eat low carb with the same brush. Of course I’m not. But there are ratbags in that community (as there are in all communities) who seem to take pleasure in seeking out and coming at those who have decided to eat a certain way, or comment about food in a certain way. And come at them they do. It gets personal, nasty, and downright horrid.
It is one thing to suggest people eat in a certain way. It’s another thing to refer to someone’s weight and fat shame them. A reply to one of my tweets that dared suggest that people with diabetes eat how they want, included a reference to ‘an obese nurse’. That tweet was followed by another low carb advocate (a physician) naming and adding a video of a diabetes educator and asking if she was the nurse. In what situation is this kind of behaviour okay?
Who are these people? I skimmed through the feeds of some of the people who commented on it being their low carb way or the high (but obviously not high carb) way, and it was unsettling. There was a lot of anti-vax sentiment. Along with anti-mask sentiments. One of two of them had an unhealthy obsession with Anthony Fauci, and wishing something terrible would happen to him. The Aussies in the mix had the same pre-occupation with Dan Andrews. I want to be clear – not everyone had these pretty extreme views, but a significant number did. It does the low carb movement no favours when so many of its members hold these types of views. It makes it easier to dismiss the whole community as being ‘cookers’ or anti-science, and I actually don’t believe that to be the case.
There are people who regularly comment on my posts and share balanced experiences about eating low carb and why it works for them. I always, always welcome discussions like this. It’s a great opportunity for me to learn, and I have adopted some of what folks like this have shared into my own diabetes management. I have also come to understand the frustration among some low-carbers because they feel that keto is not readily highlighted as an option and how many of them have been met with resistance by their HCPs when they’ve said they want to eat low carb.
But you know who else has been met with resistance? People using DIY automated insulin delivery systems. In fact, some people using a DIY system have been told what they are doing is dangerous and have consequently been ‘sacked’ by their HCP. But I am yet to see a single person from the #WeAreNotWaiting community shame anyone who has decided to not use a DIY system. Or ‘tech shame’ them. Or tell parents of kids not using a DIY system that they are the reason their kid will develop diabetes-related complications.
I’ll break this down again, by saying that I think low carb is a great option for people with diabetes. But it’s just that – an option. I know and see people with diabetes absolutely thriving, sharing in range A1cs and high percentage time in range each and every day on low carb, high carb, moderate carb and moderate-to-low carb (that’s generally where I fit in), vegan, vegetarian, carnivore, keto, Mediterranean, and every single other diet you can imagine.
I have a really simple wish and that is for people who are doing low carb do be left to do that in peace, and at the same time, they afford others the same respect and courtesy. It’s really not that radical an idea at all!
Want more on this topic? Here’s heaps I prepared (i.e. wrote) earlier.
The one where I was fat shamed after a TV interview.
The one where a fundraiser for kids in under-resourced countries was almost cancelled because of Easter eggs. (Still makes no sense!)
The one where a bloke hijacked an online discussion about menopause by demanding I explain why I don’t advocate low carb.
The one that was a plea for respecting choice.
The one that was in response to the storm after a chocolate cake recipe was shared.
The one where I shared the start of my own experiences of eating low(er) carb. And a follow up post.
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.
Manhattan’s East 41st Street is Library Way. Patience and Fortitude, the grand lions that stand guard outside the New York Public Library gaze down the street, keeping an eye on people hurrying by, and those who stop to admire the beautiful and imposing building.
Library Way is paved with bronze plaques engraved with literary quotes. I’ve walked the street between 5th and Park avenues a number of times, just to read the inscriptions.
The other day, as I hurried home to our apartment, this plaque caught my eye:
I stopped, made sure I wasn’t blocking any one’s way (lest I attract the wrath of Fran Lebowitz who is living rent free in my mind after I watched ‘Pretend it’s a City’), and I snapped a quick photo with my phone.
‘Isn’t that true,’ I muttered under my breath as I picked up speed and walked at the only pace I’ve come to accept in this gorgeous city – ultra fast.
This blog has always been about stories. Mostly mine, sometimes mine intersected with others. My advocacy life is about sharing stories and encouraging others to understand the power and value of those stories. It’s stories we connect with because we connect with the people behind them.
My time in New York is wrapping up and I’ll be back in Melbourne soon. I’ll be home, starting a new job and I’m so excited. And part of the reason for that excitement is that I will still be working with people with diabetes and their stories.
In the world of advocacy – in my advocacy life – lived experience is everything. I can’t wait to hear more stories, meet more people and learn more. And keep centring lived experience stories. Because, after all, that’s what the universe – and the diabetes world – is truly made of. Just like the plaque says.
I don’t know when it was that I decided that I wasn’t fighting diabetes anymore. Maybe it had something to do with paying more attention to language and words, or maybe it was just accepting that no matter what the strategy, no matter how much I fight, diabetes is there.
Everywhere I turn in the diabetes world, I see words that invoke battle. It is, quite frankly, exhausting. We use terms like warrior, fighter and army and challenger. We are urged to fight the good fight and battle to beat everything diabetes throws at us.
But if this is a war, I was enlisted with no option of being a conscientious objector. I feel defeated a lot of the time because no matter how much I fight, diabetes is still here, coming at me. An in range A1c, or high percentage TIR, or screening check that comes back with ‘no changes’ doesn’t mean I’ve overcome diabetes. Diabetes remains, despite what the metrics say.
We’ve all read legends and seen enough movies to know that there are winners and losers in battles and wars. And understand the good guys are meant to win. But there is no defeating diabetes. It is always going to be there. Does that make me a loser? Does that make me the bad guy?
When I started to examine the militarised language in diabetes, I realised that those very words and ideas that I’m sure were meant to motivate ended up doing the exact opposite. How was it that despite all my efforts in the trenches – and my dogged, gritty determination – I still found myself just as challenged by diabetes as when the battle started? In fact, in some ways, I felt more challenged. I wasn’t advancing in ways that made me feel like I was heading to victory. Instead, it just felt like a static, never-ending, Groundhog Day of lather, rinse, repeat (or check, bolus, repeat).
Asking me to fight puts the responsibility – more responsibility – squarely on me and me alone. How unfair that rhetoric about diabetes requires more from us.
To be at war with diabetes is to be at war with myself. I can’t divorce myself from my diabetes – it is me and I am it. We are a tag team, a group package, a two-for-one deal. I don’t get a say in that, and no one else does either, no matter how much they implore me to fight.
It’s not a battle with diabetes that I need. In fact, it’s the complete opposite. It’s finding peace. That’s what I want to work towards – a peaceful existence that doesn’t add more burden.
When I look back over 2022, it’s been a year of remarkable highs. From improved access to diabetes tech in Australia, extraordinary community alliances for initiatives such as spare a rose for Ukraine, and community-based activities reaching new heights, I feel that I can say goodbye to the year feeling that big things happened! And so, a little Interweb Jumble of this year’s highs. As well as some endings and new beginnings…
Tech access in Australia
After almost fifteen years of advocacy, Australians could celebrate with the introduction of CGM for all people with type 1 diabetes in what must be one of the most equal and simple access programs around the world. I’ve written before about the hoops required PWD need to jump through to get access to tech – even when it should be simple. With the NDSS CGM Initiative, there is one hoop and one hoop only – a form signed, and signed once only, by an HCP.
As if that wasn’t enough, some sort of miracle occurred, and Omnipod was added to the NDSS. I have been involved in discussions about Omnipod for well over a decade now, trying to massage models of access to fit a system that simply didn’t comply. Congrats to the Omnipod Australia team, and truly remarkable community engagement to make funded Omnipod a reality for Australians with type 1 diabetes.
These celebrations are all worthy, but it’s always worth remembering that there are still huge numbers of people with diabetes who would benefit from tech and are not eligible. Those cohorts need advocacy and community support to make it a reality, and I can’t wait to see just how that all rolls out – hopefully sooner rather than later.
And now we turn to NZ…
Great to see efforts increasing in New Zealand so our friends across the Tasman have access to funded CGM. Just before I flew to New York, I presented (virtually) at the ‘Transforming Lives: 100 Years of Insulin’ event held in New Zealand Parliament about community, grassroots and organisation advocacy to make the dream a reality.
#LanguageMatters keeps going from strength to strength.
The language matters movement has continued to grow, with new statements and documents launched across the world. I spoke at so many different events and webinars about language and communication and how to do better. Every little improvement, every little step towards reducing stigma is a step in the right direction.
The Diabetes Language Matters website is a brilliant resource that pulls together what’s going on around the world in one place. Massive kudos to Jazz Sethi for coordinating this work and keeping it updated – which is more than impressive when you consider just how far reaching the movement is now!
Ah, so that’s what you look like in real life?
As the world opened up again, and international travel slowly returned, face-face conferences started up again. It was with a mixture of fear, anxiety, and excitement that I jumped on a plane for my first international flight after a long time to chair the first ever lived experience symposium at ATTD. What a treat to be back around peers with diabetes who I’d only seen through Zoom screens for well over two years. I was just thrilled people recognised me without the rainbow bookshelf as my background.
#dedoc° spearheads lived experience presence at diabetes conferences
The #dedoc° voices program meant that most diabetes conferences had a visible, vocal, and very real lived experience presence not only roaming the corridors, but also on stages, in meetings and across social media more than ever before. It was truly remarkable to see people from across Europe, Asia, Africa the US, and Australia dominating social media leader boards, and building networks for collaborations, many of which are already delivering. See the #dedoc° website for more.
By the community for the community
Spare a Rose returned this year with a new name (Spare a Rose, Save a Life) and a new charity partner. And once again, we saw people with diabetes dig deep and jump on board to be part of the campaign. With war breaking out in Ukraine at the end of Feb, the SaR team pivoted quickly and literally overnight with a new, refocused operation to support people with diabetes affected by the war. Over $400,000 was raised by the community, all through social media promotion, and so, so many with diabetes doing the right thing and getting behind it.
And over November, #dedoc° led the charge for another community campaign – the Blue Balloon Challenge, which resulted in €100,000 donation from Medtronic to Life for a Child. If you want to see how amazing the community can be, all you need to do is see the hundreds of social media posts featuring blue balloons. It also is a great way to flag people who are doing things for others, uniting the community. Want to know who to follow? Follow those supporting community campaigns.
New communities
I know I have written about the weekly Diabetes Chat before, but I’m going to do it again, because any initiative that is welcoming, inclusive and fun for people across the community deserves a mention. You just need to see how diverse the weekly participants are to know the agenda set by Tom Dean and others behind the scenes – and that agenda is to create a safe space for all. I was beyond thrilled to be asked to speak at one of the first Spaces events, and even more thrilled to meet Tom in person at the #dedoc° symposium at ATTD. I know a number of people who said that they returned to participate in DOC discussions because of the weekly Spaces Chat. How special is that? Details on the Diabetes Chat website.
Global happenings
The WHO Global Diabetes Compact Forum has continued this year, ending on a high with the team publication of an article about language. It’s really worth commending the WHO for the way they responded to earlier criticisms about diabetes comms. They listened and engaged the community and this year for WDD, delivered a brilliant campaign, and hosted a terrific Spaces event they kindly invited me to be part of. I feel really lucky to know James and the WHO team working in the area of diabetes and know that they are just warming up!
IDF Congress
The conference year ended with the IDF Congress in Lisbon, which saw the Young Leaders in Diabetes Program return to the force it once was with some of the most incredibly young advocates I’ve ever had the pleasure of meeting. I can’t wait to see what they get up to!
The greatest honour …
The high to end all highs for me professionally this year was giving the Living with Diabetes Stream Award Lecture at IDF and I was so pleased to be able to use the lecture to recognise the importance of lived experience, and share how #NothingAboutUsWithoutUs became the basis of my own advocacy.
But it wasn’t only those with lived experience that I acknowledged in my lecture. I took the opportunity of standing at the lectern in Lisbon recognising the incredible allies who have supported me, and others. I started with Greg Johnson, CEO of Diabetes Vic and then Diabetes Australia whose simple words ‘If we’re talking diabetes there must be people with diabetes in the room’ have resonated each and every day in my advocacy life. And then, I moved onto people like Jane Speight, Taryn Black, Partha Kar, Sof Andrikopolous, Nat Wischer, Tadej Battelino, Chantal Mathieu, Ann Morris, Marg McGill, and the late, great, and so, so missed Tricia Dunning, who have elevated the role of lived experience, making space on stages, handing over microphones and creating places so that people with diabetes are able to influence in real, meaningful and significant ways. It was an honour to look up and see many of those people in the audience.
… and a big decision
In amongst all the highs, I decided it was time to make some big decisions. After twenty one years working in Australian diabetes organisations, I have decided that it is time for me to move on. Diabetes Australia has been my home for the last seven years, and Diabetes Vic (part of the Diabetes Australia family) launched my diabetes advocacy career fourteen years before that. My roles at both organisations have shaped my advocacy so much. They gave me a true understanding of the value of grassroots advocacy and just how vital community is in that advocacy. Greg’s words continue to ring in my ears, and I doubt there will ever be a time they don’t. And it’s those words that helped me make decisions about what I need to do next.
I walked into Diabetes Vic not knowing what diabetes advocacy was. I thought I’d spend six months doing the job while I worked out what I really wanted to do with my life after deciding that being a classically trained flute player really wasn’t it.
As it turns out, diabetes advocacy and activism is what I wanted to do with my life for those six months, and the twenty plus years after that. And it’s what I want to keep doing now. In the new year, I’ll finish up at Diabetes Australia and then take on a role that will see me working beyond Australian borders, and, most excitedly, with a focus on community advocacy and engagement. I simply can’t wait.
But for now, I’m celebrating the big year that was in NYC for another couple of months, hugging my family, hoping for snow, visiting holiday markets, listening to jazz, and finding warm corners of historic hotels to write and drink tea. All while looking forward to bigger and brighter things to come.
DISCLOSURES:
I work for Diabetes Australia and have been involved in advocacy efforts for CGM for All.
I was invited by A/Prof Ben Wheeler from University of Otago and Te Whatu Ora Southern to speak at the New Zealand event about CGM funding and volunteered my time.
I am Head of Advocacy for #dedoc°. Flights and accommodation for attendance at ATTD and EASD was covered by #dedoc°. Press passes were covered by the conference organising committees.
I am a volunteer for the Spare a Rose campaign.
I am a co-author for the WHO journal article mentioned. I volunteered my time to be involved in this work.
I was an invited speaker at the IDF Congress. I was also invited to speak at the Young Leaders in Diabetes Training Summit. I was not paid for my work with the group. Flights and accommodation were covered by the IDF.
Diabetogenic 