Diabetogenic

Talking complications checklist

April 4, 2023 in Awareness, Communication, Complications | 3 comments

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

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

Not a media stunt

April 3, 2023 in Awareness, Communication, Complications, Diabetes, Engagement, Lived experience, Real life, Wellbeing | 4 comments

‘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.

Fiasp Friday #2

March 28, 2023 in Diabetes | Leave a comment

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

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

Deserving more than a cupcake

March 27, 2023 in Advocacy, Awareness, Community, Diabetes, DOC, Engagement, Health, Peer support, Real life, Research, Social media, Women's health | 1 comment

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.

ChatGPT gets it!

March 24, 2023 in Uncategorized | 3 comments

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!

Happy Fiasp Friday!

March 17, 2023 in Advocacy, Awareness, Communication, Community, Diabetes, Social media | 2 comments

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.

A not-so-radical idea

March 7, 2023 in Community, Food, Health, Social media | 4 comments

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!

A photo of a short macchiato on the bench of a cafe. — Surely we can all agree that this is a thing of beauty!

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 wher e 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.

Can you hear the groundswell?

March 1, 2023 in Advocacy, Awareness, Community, Diabetes | 1 comment

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°°.

Spare a Rose – by and for the community

February 13, 2023 in #SpareARose, Advocacy, Awareness, Community, Diabetes, DOC, Social media | 1 comment

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.

Stories

February 3, 2023 in Advocacy, Awareness, Community, Diabetes, Lived experience, Real life | 2 comments

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.