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Diabetes stigma is a hot button topic in the diabetes world. It has been for some time. I wrote just last month how stigma was one of the most talked about issues at ADA. That week, we also launched an Open Letter from the Diabetes Community, asking health professionals to join us in our call to stop diabetes stigma.
And behind the scenes, for all of this year, another exciting, BIG, project has been hatching and I’m so excited to share it today.
Earlier this year, in an unprecedented show of unity and determination, a group of 51 experts from 18 countries joined forces to pool our lived, research and clinical experience to address diabetes stigma and discrimination. Together, we’ve reviewed the scientific evidence and established an international consensus on 49 Statements of Evidence and Recommendations. The full report on this review has been submitted and is currently under review.
Excitingly, the group also reached a consensus on a Pledge dedicated to bringing an end to diabetes stigma and discrimination. And that’s where you come in! Everyone can sign to show your commitment stop the ingrained negative judgments, stereotypes, and prejudices that influence attitudes about diabetes, and contribute to the stigma so many of us face. This isn’t just for the community. We know there is sometimes an echo chamber as we say the same things to each other, over and over. We also know that while diabetes stigma is indeed prevalent within our community, we also need to tell the story of its harm outside the diabetes world.
Well, here’s an easy way to do both. Please sign the pledge and share details across your social platforms. You can sign as an individual, and we’d also love for you to see if your place of work, school, community group, hospital, church, sporting team, favourite cafe…basically anywhere that is likely to come into contact with people with diabetes (i.e. literally everyone!) would be interested in signing too.
This is a true community effort, with involvement from stakeholders from across the diabetes landscape, across the world. You won’t see logos anywhere, because this for and about all people with diabetes. The names of the people involved in the work so far is on the website.
Are you with us?
All too frequently, when talking about meaningful lived experience engagement, I hear about ‘Hard to Reach Communities’. A number of years ago, I called rubbish on that, putting a stop to any discussion that used the term as a get out of jail free card to excuse lack of diversity in lived experience perspectives.
‘People with type 2 diabetes don’t want to be case studies’ or ‘Young people with diabetes don’t respond to our call outs for surveys’ or ‘People from culturally and linguistically diverse communities won’t share their stories’ or ‘Folks in rural areas don’t come to our events’. These are just some real life examples I heard when asking why there was no diversity in the stories I was seeing.
See how the blame there is all on the people with diabetes? They don’t want, don’t respond, won’t share, won’t attends. It’s them. They’re the problem. It’s them.
I stood on stage at EASD in Stockholm last year and challenged the audience to stop using the term ‘hard to reach’. Because that’s not the case at all. The truth is that in most cases, the same old, uninventive methods are always employed. And those methods only work for a very narrow segment of the community.
I recently heard someone begrudge that all applicants who responded to a recent call out for a new committee were the same: white, had type 1 diabetes, city-dwelling. ‘Of course they are,’ I said. ‘That’s the group that loves a community advisory council and responds to an expression of interest call out on socials. They are able to attend meetings when they are scheduled, are confident to speak up and are willing to share their story, because they probably have before and received positive feedback for doing so Plus, they’re expecting everyone else at the table will look and sound just like them.’
But the lack of diversity isn’t the problem of the people who didn’t respond. It’s the problem of whoever is putting out a call and expecting people to reply because that’s how it’s Always Been Done.
This was a discussion at a meeting during last week’s American Diabetes Association Scientific Sessions. The #dedoc° voices were meeting with the ADA’s Chief Scientific Officer, Dr Bob Gabbay, and Vice President in Science & Health Care, Dr Nicole Johnson. The question about how to reach a broad audience was asked. At #dedoc°, efforts have been made to attract a diverse group of people to our scholarship program, and have, to a degree there as been some success. A glance at any one of the #docday° events, or scholarship alumni will see people who had not previously been given a platform within the diabetes community. But there is always more than can be done.
The discussion in that meeting at ADA mirrored many that happened throughout the week. And it’s not surprising that US diabetes advocate Chelcie Rice came up with the perfect way to explain how to do better at engaging with the who have previously been dismissed as ‘hard to reach’. He said: ‘You can’t just put pie in the middle of the table. Deliver the pie to where they are.’ And he’s right. Those tried and true methods that work for only one narrow segment of the community have been all about putting pie in the middle of the table, knowing that there will be some people ready with a plate and a fork. But a lot of people are not already at the table, or comfortable holding out their plate. Or maybe they don’t even like that pie. But we never find out because no effort is really made.
Chelcie once said ‘If you’re not given a seat at the table, bring your own chair‘ and I’ve repeated that quote dozens, if not hundreds of times. And his words ring very true for people like me who have felt very comfortable dragging my own chair, and one for someone else and insisting that others scramble to make room for us. But that metaphorical table isn’t enough anymore. Not everyone wants to sit at a table and we need to stop expecting that. Instead, it’s time to find people where they are – the places, the settings, the environments they feel comfortable and at home. That’s how you do engagement.
On day 2 of the American Diabetes Association Scientific Sessions, rushing between meetings, I overhead another attendee say this: ‘I’ve never heard so many people talking about diabetes stigma’. I turned to them, a bright smile on my face and said, ‘I know, right?’, (a phrase I only ever utter when I’m in the US).
Just a few hours earlier, Jazz Sethi and I had tweeted simultaneously, setting free an open letter from the diabetes community about diabetes-related stigma. You may have seen it; thousands of people have. And others have shared, commented and even translated it into different languages (I think we’re at 6 translations and counting). Here it is!
When we first asked advocates from the community if they would like to add their logo to the letter we were surprised by the quick response. Almost everyone we went to said yes. We hadn’t gone out too widely – we wanted to test the waters first. The first version of the open letter includes advocates and peer support groups from across the world. Amazing!
And after our very low-key, (i.e. a couple of tweets from unverified Twitter accounts, so who knows what the algorithm did with them!), we were once again inundated by people asking for us to add their logos. (We haven’t managed to add them yet, but absolutely will in coming weeks. Please give us time if you’ve shared your logo. We’ll get there. And I’ll update this post with the new final page when that happens.)
There is something magic about these sorts of very grassroots, very community, very inclusive initiatives. Not only are they great because they collaboratively offer a narrative from people with diabetes, highlighting an issue that is of great importance to many. They also show you just how powerful and united our community is while also pointing to individuals and groups who are keen to work together, support each other and power the importance of lived experience. And that’s pretty special!
Imagine a community where people come together to make things happen. You don’t have to look far, really. Just look at the diabetes community!
Here’s something new from some folks (Jazz Sethi, me and Partha Kar) who are desperately trying to reshape the way diabetes is spoken about, and how fortunate I feel to have been involved in this project!
The thinking behind these particular language resources is to truly centre the person with diabetes when thinking about communication about the condition. In this series, we’ve highlighted three groups where we know (because these are the discussions we see in the diabetes community) language can sometimes be stigmatising and judgemental. This isn’t a finger-pointing exercise. Rather it’s an opportunity to highlight how to make sure that the words, images, body language – all communication – doesn’t impact negatively on people with diabetes.
A massive thanks to Jazz and Partha. Working together, and with the community, to create and get these out there has been a joy. (As was sneaking into the ATTD Exhibition Hall before opening time so we could get a coffee and find a comfortable seat to work before the crowds made their way in!) And a super extra special nod to Jazz who pulled together the design and made our words look so bright pretty! And a super, super, super special thanks to Jazz for designing my new logo which is getting its first run on the back of these guides.
You can access these and share directly from the Language Matters Diabetes website. These don’t belong to anyone other than the diabetes community, so please reach out if you would like to provide any commentary or be involved in future efforts. There’s always more to do!
On Sunday, one of those annoying diabetes things happened – a kinked insulin pump cannula, subsequent high glucose levels followed by a little glucose wrangling tango where, instead of rage blousing, I tried to gently guide my numbers back in-range. I thought about how frustrating diabetes can be – unfairly throwing curve balls at us even when we are doing ‘all the right things’. And so, I used this little story for a post on LinkedIn to illustrate why I am so dedicated to making sure that stories like this are heard and lived experience is centred in all diabetes conversations.
Meanwhile, anyone who has even the barest of little toes dipped in the water of the diabetes community would have heard about Alexander Zverev being told by French Open officials that he was not permitted to take his insulin on court. He was expected to inject off court and, according to Zverev, was told ‘looks weird when I [inject] on court’. Insulin breaks would be considered as toilet breaks.
What’s the connection between this story and my LinkedIn story? Absolutely none. Except there kind of is.
I’m not about to write about sports or try to connect my story with that of a top-ranking tennis player. That would be totally out of my lane. (The couple of years of tennis I took when I was in grades five and six give me no insight into life of a tennis player.)
However, when it comes to discussing diabetes and the stigma surrounding it, I’m definitely in my lane. I understand and am very well-versed when it comes to talking about the image problem diabetes faces and how that fuels the stigma fire.
The response from the diabetes community when the Zverev story broke. Most people were incredibly supportive of the tennis player and rightfully indignant of the incident. JDRF UK responded swiftly with an open letter to the French Open organisers, eloquently highlighting why their ruling needed to be changed. And changed it was.
My LinkedIn post was shared a few times and there were comments from people saying that these stories help others better understand our daily challenges and work to cut through a lot of the misconceptions about diabetes.
And then there was this direct message:
I bristled as I read it. My initial response was ‘How dare this man try to tell me what I can and can’t post on LinkedIn. Who is he to tell me what I can and can’t share?’ I snapped a reply back to him where I pointed out: ‘…I am a diabetes advocate, working to change attitudes and raise awareness about living with diabetes. My post belongs here on LinkedIn as it very much aligns with the work I do.’
But I haven’t been able to stop thinking about it because as problematic as it is for someone trying to silence what people with diabetes share online, there was more that was troubling me.
The idea that diabetes is a topic only appropriate in certain contexts and should be hidden away from others reinforces shame. Suggesting work settings are not the place to talk diabetes plants that seed that diabetes, and people with diabetes, could be liabilities in the workplace. Talking about diabetes on LinkedIn – a platform for business and workplace networking – is relevant because people with diabetes exist in business and workplaces, and the reality is that diabetes sometimes interferes with our work. Which is perfectly okay. Last week, I needed to refill my pump during a meeting. So, I let others on the call know what I was doing and carried on. On another day, I was recording a short video about a research program and after take 224 realised I needed to treat a hypo and did so. I shouldn’t need to feel that these aspects of daily life with diabetes are only allowed to happen out of view.
Essentially, this is what Alexander Zverev was being asked to do at his workplace: hide away when he needed to perform a task that keeps him alive, as if there is something shameful and disgusting about it. In my mind, this top ranked tennis player playing in a Grand Slam competition should be commended. I mean, any tennis player who does that is remarkable. Zverev does it and then goes about performing the duties of a pancreas. His opponents don’t have to do that! Their pancreas doses out the perfect amount of insulin without any help. Talk about an unfair advantage!
Not everyone wants to talk diabetes with others and that’s fine. But those of us who are happy to speak about and ‘do diabetes’ wherever we are shouldn’t feel that we are doing anything wrong. Diabetes stigma exists because there are so many wrong attitudes about diabetes. It’s insidious and it’s damaging. It erects barriers creating a climate of shame and perpetuates misconceptions that lead to ignorance. And it pressures us to hide away the realities of diabetes, as if there is something to be ashamed of. But there is nothing shameful about living with diabetes. There is nothing shameful about injecting insulin on Centre Court at Roland-Garros, or sharing frustrations on LinkedIn. Or anywhere else. Diabetes has a place wherever your workplace might be. Stigma, however, does not.
I woke up (at 4am thanks to a hypo, but that’s another story all together) and scrolled through a variety of social media feeds and, because I seem to follow a lot of diabetes-related pages and people, was bombarded with the below. And so, these are my very early morning musings, a stream of consciousness mess, the logic and rationality of which is most likely influenced by low blood sugar. (The typos, however, are all mine.)
So, let me begin by saying that this is important work – of course it is. The DiRECT trial has really put the idea of diabetes remission on the research agenda, encouraging further research into the issue, provided another potential diabetes treatment option for people with type 2 diabetes, and supporting people with type 2 diabetes looking at this way of managing their diabetes. Choice. It’s a good thing!
Today we have some follow up data (after the initial two years of the trial), providing updates on how research participants are going. Again. It’s important research, and it is helping increase knowledge and understanding of type 2 diabetes. Good stuff!
But one of the things I am all about is accuracy in reporting and this, my friends, isn’t it.
I wasn’t going to even touch the heading of the article, because surely the inaccuracy of it doesn’t need highlighting at all, but let’s go there anyone. The DiRECT trial is researching people with type 2 diabetes, and it probably would be good to mention that. I guess that nugget is in the sub-heading, but it might be good to not relegate it there.
But let’s look at that sub-heading. ‘Stay free of symptoms’ is an interesting thing to highlight when we know that in many cases, people with undiagnosed T2D don’t have any symptoms anyway. Surely focusing on what it means in terms of day-to-day life with diabetes (i.e. medication, monitoring requirements, daily burden of ‘doing diabetes’, frequency of HCP visits) would be more meaningful.
Back to the heading and we have the word reverse which is pretty much incorrect in all ways possible. The word they’re looking for is remission. Why? Because even if the result from those in the study is that they don’t require diabetes meds, and their glucose levels are back in range, they still do have diabetes.
I’m not a statistics person. Data hurts my head and numbers make me cry, and I get the complete and utter irony of saying that considering that I live with a condition that depends on me understanding data and numbers, but now is not the time to come at me and my 2.9mmol/l self. Please and thank you.
But there is a number in this research that seems to be jumping out at me and it’s this number: 23%. Let me clarify (this is from the Diabetes UK press release): 23% of participants who were in remission from type 2 diabetes at two years in the original trial remained in remission at five years.
It’s important to also point out that this isn’t 23% of the total people who started in the DiRECT trial five years ago – not all participants were in remission after two years. At two years, 36% remained in remission. Or 53 out of the original 149 research participants in the intervention group (plus a additional 5 people in the control group).
So that 23% is of 58 people who remain in remission now at five years. That’s 13 people. Or about 8% of the starting number. That’s a very different story to what is being presented in news stories, media releases and cross socials today, isn’t it?
And that matters. Big time. Because there is real danger that many people will read the media reports today and in their minds that will mean that remission from type 2 diabetes is a far more likely outcome than reality and is the likely outcome for everyone.
I’m not here to argue whether remission is a thing or not – it is. FOR SOME PEOPLE with type 2 diabetes. Adding pieces to help understanding of the giant puzzle that is diabetes is brilliant for everyone. Research helps us do that. Sharing that research so that people living with diabetes better understand the options available and learn more about how our particular brand of diabetes works is gold!
But I am here to argue that publishing grand sweeping statements about how to ‘reverse’ type 2 diabetes, or telling only part of the story about the research, without the necessary nuance, is inaccurate and will further stigmatise type 2 diabetes and those living with it, especially those who are not able to achieve remission of their condition. The very idea that they could be made to feel that they are not trying hard enough or that they have failed is not being sensationalist.
The stigma associated with type 2 diabetes is considerable and everyone has a responsibility to making it better and not add to it. And surely an even heavier burden of that should fall to those who are working in diabetes. If my 4am, glucose-starved brain is able to grasp how stigmatising something like this could be to people with type 2 diabetes, then it should be glaringly obvious to anyone who has even a passing interest in the condition.
There’s been quite a bit of discussion after yesterday’s post about a recent consultation I did with a creative agency looking to develop a campaign about diabetes-related complications. I try to be solutions oriented and offer ideas, rather than just swoop in and be critical, so with that in mind, I’ve put together a couple of checklists that may be of some assistance when thinking about ways to talk about complications.
Of course, as always, these are just my suggestions and others may completely disagree with them, or having more to add. But this is a start that can be considered, shared and built on. And it comes with the ever present reminder that people with diabetes deserve to see themselves represented in ways that don’t make us want to run for the hills or hide under the doona (duvet) and never come out. That’s always a really good place to start!
‘What would the ideal campaign about diabetes complications look like?’
What a loaded question, I thought. I was in a room full of creative consultants who wanted to have a chat with me about a new campaign they had been commissioned to develop. I felt like I was being interrogated. I was on one side of a huge table in a cavernous boardroom and opposite me, sat half a dozen consultants with digital notepads, dozens of questions, and eager, smiley looks on their faces. And very little idea of what living with diabetes is truly about, or just how fraught discussions about diabetes complications can be.
I sighed. I already had an idea of what their campaign would look like. I knew because more than two decades working as a diabetes advocate means I’ve seen a lot of it before.
‘Well,’ I started circling back to their question. ‘Probably nothing like what you have on those storyboards over there’. I indicated to the easels that had been placed around the room, each holding a covered-over poster. The huge smiles hardened a little.
Honestly, I have no idea why I get invited to these consultations. I make things very hard for the people on the other side of the table (or Zoom screen, or panel, or wherever these discussions take place).
I suppose I get brought in because I am known for being pretty direct and have lots of experience. And I don’t care about being popular or pleasing people. There is rarely ambiguity in my comments, and I can get to the crux of issue very quickly. Plus, consulting means getting paid by the hour and I can sum things up in minutes rather than an afternoon of workshops, and that means they get me in and out of the door without needing to feed me. I think the industry term for it is getting more bang for their buck.
I suggested that we start with a different question. And that question is this: ‘How do you feel when it is time for a diabetes complication screening’.
One of the consultants asked why that was a better question. I explained that it was important to understand just how people feel when it comes to discussions about complications and from there, learn how people feel when it’s time to be screened for them.
‘The two go hand in hand. I mean, if you are going to highlight the scary details of diabetes complications, surely you understand that will translate into people not necessarily rushing to find out more details.’
I told them the story I’ve told hundreds of times before – the story of my diagnosis and the images I was shown to convey all the terrible things that my life had in store now. Twenty-five years later, dozens and dozens of screening checks behind me, and no significant complication diagnosis to date, and yet, the anxiety I feel when I know it’s time for me to get my kidneys screened, or my eyes checked sends me into a spiral of fret and worry that hasn’t diminished at all over time. In fact, if anything, it has increased because of the way that we are reminded that the longer we have diabetes, the more likely we are to get complications. There is no good news here!
‘But people aren’t getting checked. They know they should, and they don’t. And some don’t know they need to. Or even that there are complications,’ came the reply from the other side of the table.
Now it was me whose face hardened.
‘Let’s unpack that for a moment,’ I said. ‘You have just made a very judgemental statement about people with diabetes. I don’t do judgement in diabetes, but if you want to lay blame, where should it lie? If you’re telling me that people don’t know they need to get checked or that there are diabetes complications, whose fault is that?’
I waited.
‘Blaming people or finding fault does nothing. That’s not going to help us here. You’ve been tasked to develop something that informs people with diabetes about complications – scary, terrifying, horrible, often painful – complications. Do you really want to open that discussion by blaming people?’
Yes, I know that not everyone with diabetes knows all about complications, and there genuinely are people out there who do not fully understand why screening is important, or what screening looks like. The spectrum of diabetes lived experience means there are people with a lot of knowledge and people with very little. But regardless of where people sit on that spectrum, complications must be spoken about with sensitivity and care.
The covers came off the posters around the room, and I was right. I’d seen it all before. There were stats showing rates of complications. More stats of how much complications cost. More stats of how many people are not getting screened for complications. More stats showing how complications can be prevented if only people got screened.
‘Thanks, I hate it,’ I thought to myself silently.
I spent the next half an hour tearing to shreds everything on those storyboards. We talked about putting humanity into the campaign and remembering that people with diabetes are already dealing with a whole lot, and adding worry and mental burden is not the way to go. I reminded them that telling us again and again and again, over and over and over the awful things that will happen to us is counterproductive. It doesn’t motivate us. It doesn’t encourage us to connect with our healthcare team. And it certainly doesn’t enamour us to whoever it is behind the campaign.
I wrapped my feedback in a bow and sent a summary email to the consultants the following day, emphatically pointing out that I am only one person with diabetes and that my comments shouldn’t be taken as gospel. Rather they should speak with lots of people with diabetes to get a sense of how many people feel. I urged them again to resist using scare tactics, or meaningless statistics. I reminded them that all aspects of the campaign – even those that might not be directed at people with diabetes – will be seen by us and we will be impacted by it. I asked that they centre people with diabetes in their work about diabetes.
But mostly, I reminded that anything to do with complications has real implications for people with diabetes. What may be a jaunt in the circus of media and PR for creative agencies is our real life. And our real life is not a media stunt.
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.
Hey, do you remember a couple of weeks ago when it was International Women’s Day and women got a cupcake (probably baked by a woman) and a breakfast (probably organised by a woman) and then we all agreed that gender equality didn’t need to be spoken about for another year?
Look, I know I sound cynical. But that’s only because I am. Every year at Diabetogenic, I write a post celebrating the incredible women working in diabetes. Mostly I centre diabetes advocates who are generally donating their time – and emotional labour – to power advocacy efforts and make change. And if you look back at the history of the DOC, you will see that the majority of the work has been by women in the community. (Don’t @ me with your ‘But I’m a bloke and I’ve done this’ commentary. It’s not the time for #NotAllMen.)
This year, I started to write something, and then stopped, and started again. And then stopped. Anyone who is a frequent visitor to this site or follows any aspects of my personal advocacy knows that I celebrate the incredible work done by grassroots and community advocates (many/most of whom are women) throughout the year and I didn’t want to buy into the ‘It’s-IWD-here-are-the-womens-now-it’s-back-to-the-misogyny-we-usually-deal-with’ crap that seems to be the aftermath of each and every IWD.
So, I’m using today – this random day – to give a shout out to some of the great things going on that you may have seen, or you may have missed. These things are powered by women who, in most cases, are doing this as extra work on the side of their day jobs, and everything going on in their personal lives. But it’s undeniable that it’s this sort of stuff that is going on all the time, usually flying under the radar, but it’s making a difference to so many folks in the diabetes world.
And so…
There is some remarkable work out of India where the Blue Circle Foundation continues to make a mark in diabetes advocacy. On IWD, a team of women from the Foundation conducted an awareness program for 200 women inmates in Yerwada Jail in Pune, India. This is part of their ongoing Project Gaia which creates safe spaces for women with diabetes. Snehal Nandagawli is just one of the women involved in this work. You can hear more from her at this week’s #dedoc° #docday°.
From the UK, Mel Stephenson-Gray has been a brilliant force in the diabetes community for a number of years. She recently launched a fabulous new Insta page celebrating and empowering women with diabetes. It’s called Diabetes Women’s Health Club and the information she’s been sharing (accompanied by gorgeous graphics) is brilliant. I loved the profiles of some of women who were groundbreaking pioneers in diabetes research. Go give the page a follow now!
Dawn Adams hasn’t managed to convince me that she is only one person because the sheer volume of the work she is doing is immense and she’s bloody everywhere. Dawn continues to blaze trails in her research and writings about diabetes and menopause (follow @MenopauseMither on Twitter for great information and support), has been featured in a number of Diabetes UK publications, spoke at the recent #dedoc° symposium at ATTD, and continues to be a daily support and mentor to people across the global diabetes community. I’ve barely scratched the surface with this list. Someone please send Dawn a coffee and cinnamon bun so she can sit down for 30 seconds and recharge her batteries!
Another woman who is a human powerhouse and obviously works 23 hours a day (lazily, she sleeps for an hour) is Jazz Sethi whose work with the Diabesties Foundation continues to multiply exponentially. She’s also a brilliant speaker and gave an emotional talk at ATTD last month. Check out just some of what she is doing here (and stay tuned for something super exciting that we’ve been working on together!)
Also at the recent ATTD #dedoc° symposium, Hamidah Nabakka from the Sonia Nabeta Foundation captivated the packed-to-capacity room, sharing stories of children and young people living with diabetes in Africa. This was held on the first day of ATTD and for the rest of the week, I had people coming up to me and saying that it was their highlight of the whole conference.
I’m getting to this a little late because it was started last year, but Niki Breslin started a brilliant Insta page to build community called ‘My Type of Family’ for anyone with diabetes who is planning and trying to conceive, pregnant, recently had a baby and parenting. There’s lots of great information and encouragement for the community with this page and definitely worth a follow!
I was so excited to see some artwork by Miss Diabetes from New Zealand make it across the ditch Melbourne in an IWD street art exhibition. Her comic ‘Women and Diabetes’ was on show in our city’s iconic Hosier Lane! Miss Diabetes’ diabetes advocacy is super well-known in the community thanks to her tireless efforts supporting Insulin4All efforts and with work she’s done with the WHO diabetes team. You can see the artwork here.
Anita Sabidi in Indonesia continues to drive and build community with her advocacy work that shine very bright lights on issues such as emotional wellbeing and mental health, and women’s health. Anita is a regular speaker about these important topics, and also leads a number of community initiatives supporting women with diabetes in Indonesia. She’s also speaking at #docday° this week.
Dana Lewis never ceases to amaze. Last week she ran 100kms in a day, but unbelievably, it’s not her physical feats that make her name so well known in the diabetes world. It is, of course, her work in open source AID. Last month she gave two presentations at the Open Diabetes Closing Conference, and she has an upcoming session at the ADA Scientific Sessions in San Diego. On top of that, she continues to publish regularly and is a force for nothing but good!
Ashley Ng from Australia has been documenting life with two gorgeous little girls on her blog, opening up about some of the more difficult aspects of parenting while living with diabetes. I love Ash’s candidness and honesty and am always grateful for her ability to be so raw, but also hopeful. Read and subscribe to her blog here.
These women are just a few of the many who continue to make our community tick and flourish. There work is not only meaningful on 8 March: it’s making a difference every, single day. The very idea that women and their achievements get just one day of real celebration (albeit while battling the calls of ‘where’s International Men’s Day?’) is in equal parts frustrating and insulting. I celebrate the incredible work that women spearhead all the time because I know that alongside that work, they are dealing with patriarchal attitudes that make their successes all the more remarkable. That deserves far more than a cupcake!
Postscript
The UN theme for the day was DigitALL: Innovation and technology for gender equality, not the saccharine sweet ‘EmbraceEquity which means absolutely nothing and was created by some corporate machine that does nothing to advance equality in any way. So, if you spent IWD posting selfies of you hugging yourself, that’s great, but what did that really mean when it comes to advancing gender equality?
If you haven’t had a look at the website from the UN, it’s definitely worth it, even if it’s just to see the high-level details, one of which explains that online gender-based violence silences women and discourages their public participation. It may be odd to think this is a thing in the diabetes community when so much of what you see comes from women, but actually, it’s real. Harassment is a concern for many women, and I know of many women who have stopped sharing or locked down their accounts (permanently or temporarily), or deleted them completely, due to this harassment. I’m one of those women. This is something to be mindful of every day – not just a single day in March.
Four weeks. That’s about how long ago it was that the first murmurings of Fiasp being withdrawn from the PBS were heard in the Australian diabetes community.
It’s been a pretty wild ride in those four weeks, hasn’t it? I never should be surprised at the dedication and never-say-die attitude of diabetes communities, but what we saw from the Australian community was next level! And it went beyond that, with Aussie advocates rallying our friends from overseas (hello #dedoc° Voices!) to amplify our efforts here.
And today, news of a reprieve. Fiasp would be available on the PBS for another 6 months for anyone with a script dated prior to 1 April 2023. (That’s the catch – you need a script before that date, or you will have to pay the private prescription cost.)
This is a great result. It gives everyone with diabetes using Fiasp some breathing space to make plans for what happens if we need to change insulins.
There are a lot of beautiful things about grassroots advocacy. Firstly, it can be incredibly responsive. It takes just one person to share, and the community response is often instantaneous.
We saw that here, didn’t we. As soon as it was just a hint about what was going on with Fiasp, people with diabetes in Australia took to it. This was even before the Minister’s office was aware of what was happening! From a petition (amazing, Belinda!), blog posts and discussions in social media groups, to standing around conference exhibition halls (this is exactly what was going on at ATTD with Aussie advocates!) the momentum started and picked up speed.
It is undeniable that the best results happen when everyone works together, and as I said in my post about this issue a couple of weeks ago, …Community advocacy is often the starting point of rumblings that, combined with strong advocacy from diabetes organisations, leads to policy change.
This is a dazzling example of exactly that! A community of all stakeholders coming together, led by community. Doesn’t THAT make you feel all warm and fuzzy? And today, people with diabetes have celebrated in great ways – the people who should be centred in this win for their efforts. This was my tweet about that earlier today:
Some final thoughts
Celebrate the win and cheer with other community advocates. I’ve loved seeing the commentary in online community groups today! Our celebrations are so meaningful because it is our fridges that were going to be bare of Fiasp if this didn’t come through!!
I know it’s tempting to stockpile, but please don’t! There are 14,000 Australians using Fiasp and hopefully everyone who needs to get a script filled over the next six months will be able to do so effortlessly. Of course there is the human urge to make sure we don’t run out but remember that if you have a year’s supply in the fridge, that might mean someone can’t get their next week’s supply.
This isn’t done yet! Six months is AWESOME but keep the pressure up with the grassroots efforts that worked this time.
Diabetogenic 