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There’s been a lot said about AID equity over the last few weeks. Actually, way longer than that. The momentum may have ramped up since a meeting at ATTD in Florence, but this has been something that the community has been speaking about for ages. In fact, I found a policy document advocating for pump access for all people with T1D from ten years ago, and I spoke at its launch in Parliament House . In there is a direct quote from me: ‘I decided to start using an insulin pump because my husband and I wanted to start a family. I knew of the importance of tight diabetes management prior to and during pregnancy. Insulin pump therapy gave me the ability to tailor and adapt my insulin doses to provide me with the best possible outcome – a beautiful healthy daughter.’
For the last six years I’ve been talking about how transformative AID has been with quotes like this: ‘Short of a cure, the holy grail for me in diabetes is each and every incremental step we take that means diabetes intrudes less in my life. I will acknowledge with gratitude and amazement and relief at how much less disturbance and interruption there is today, thanks to LOOP (AID).’
But enough from me. This is an issue that the T1D community owns and is engaged in. Last week at the #dedoc° symposium at the Diabetes UK Professional Conference, brilliant diabetes advocate Emma Doble spoke about patient and public involvement, highlighting how it refers to being with or by the community, not to, about or for them. The AID equity work underway is definitely with and by. It’s something community is calling for as a priority. A visit to any online T1D group will demonstrate that, and spending any time speaking directly with community will provide insight into the number of people who simply cannot access AID because they cannot afford an insulin pump. This is standard T1D care. The evidence is clear.
To get an idea of just how the T1D, and broader diabetes community feels, have a read of their own words. These comments are from the Make Automated Insulin Delivery affordable for all Australians with type 1 diabetes petition. They’re all publicly available, so you can click here to read the comments I’ve shared and many, many more.
Hasn’t it been terrific this week seeing a couple of great news stories in the T1D tech world? Our friends across the ditch in NZ have welcomed an announcement from medical regulatory board Pharmac that all people with type 1 diabetes will have access to CGM and automated insulin delivery devices (AID). Meanwhile, this week saw the start of a five-year national roll out of AID in England and Wales which recommends access be granted to children and adolescence (under 18 years) with T1D, pregnant people with T1D and adults with T1D with an A1c higher than 7%.
So, where is Australia when it comes to people with T1D being able to affordably access automated insulin delivery devices?
Let’s start by highlighting the positives. There’s so much to be grateful for here in Australia. The NDSS continues to be a shining light for Australians with diabetes. Syringes and pen tips are free at NDSS collection points and BGL strips are subsidised. Since 2004, insulin pump consumables have been on the NDSS, CGM sensors and transmitters have been subsidised since 2022. Insulin is heavily subsidised by the PBS.
But even with these benefits diabetes remains costly, and the playing field isn’t level. Pumps remain out of reach for many Australians. Without private health insurance or meeting eligibility to apply for the government funded Insulin Pump Program, people with T1D are required to find up to $10,000 for an insulin pump. That’s simply not affordable and it means that Australians with T1D can’t access AID.
With AID providing real life-changing benefits and significant reduction in diabetes burden, now is the time to ensure that the tech is available to everyone with T1D who wants it – not just those who can afford it. And that means that it’s time to equitably fund the missing piece of the AID puzzle: Pumps.
A fire has been lit. From a small meeting at ATTD in Florence to catch ups, coffees and phone calls back home, the groundswell has well and truly started. People with diabetes are central to this, working closely with motivated and determined HCPs and diabetes community organisations. There is a united focus on what needs to be done: affordable insulin pumps so AID is a reality for every Australian with type 1 diabetes who chooses. And excitedly, there seems to be an appetite for this from policy makers.
So what can we learn from the recent successes in NZ and the UK? Well, it’s exactly what we know from our previous advocacy experiences and wins here in Australia. A united stakeholder approach is critical with everyone from individuals with diabetes, community groups, diabetes organisations, professional bodies, researchers, industry all being clear and consistent about the ask. Simple and effective communication about the issue is needed. Community drives the momentum – it always does and recognising that is essential. Using evidence to support why AID must be available to all with T1D is important, and goes perfectly with sharing examples of lived experience to highlight the benefit of the technology. Hearts and minds.
With the push already well established and a number of people powering the charge, it’s inevitable that the diabetes world in Australia is going to be hearing a lot about equitable AID and pump access in coming months. Keep an eye out on community groups for grassroots efforts to elevate the issue and for calls to get involved. We know that we can get this done – just as with getting CGMs funded for all people with T1D, for finding a novel way for Omnipod to be funded, and for Fiasp remaining on the PBS. (And, if we look further back, for getting pump consumables on the NDSS.)
Community will be critical to getting this across the line. Once again, we’ll need people with diabetes to step up and write letters, meet with local MPs, make noise, and show why this is necessary. Every single person with T1D and their families has a role to play here. If you’re already fortunate to be using AID, meet with your local MP and tell them how it has changed your life. If you haven’t had access, write about why you know it will help. For me, I’ll be talking about how much time I have grasped back not needing to do diabetes, how I have far fewer hypos, how I have an A1c in the ‘non-diabetes’ range which evidence suggests reduces my risk of developing costly complications. But most importantly, it has reduced my diabetes burden so much and that makes me a far happier, more productive person. And I want that for everyone with T1 D.
Postscript: a quick word (or two) about language. Media reports, especially in the UK, have incorrectly referred to the technology as an ‘artificial pancreas’. What we are talking about is automated insulin delivery devices (or hybrid closed loop systems). It’s important to get the language right for a couple of reasons: Artificial pancreas is simply not the correct term for what the technology is. It overstates what it does and potentially leads people to think the technology is a cure for T1D. Additionally, it underestimates the work that PWD do to drive the technology. More detail about why getting the terminology right is important can be found in this piece I wrote back in 2015 about the same issue and then again here from almost exactly two years ago.)
I’m introduced most generously by Adrian Sanders, Secretary General of the Parliamentarians for Diabetes Global Network.
Ten years ago, Australian Prime Minister Tony Abbott appointed himself as the Minister for Women. Much has been written about the message this sent and what the government of the time really thought about women, despite the carefully framed rhetoric being spewed in press releases and at doorstop press conferences. But this post is not a lesson in Australian politics. It merely sets the scene for me to speak about the underhanded ways that those whose voice should be heard are silenced.
Diabetes advocacy sits in an environment that often resists the voices of those most affected by diabetes, at times in somewhat sneaky ways. A wolf in sheep’s clothing in advocacy comes in the form of anyone claiming to advocate by ‘being the voice’ of people with diabetes, which is problematic not least because we have our own voices and don’t need others to speak for us. Being adjacent to diabetes does not give anyone license to speak on our behalf. In fact, the very idea that anyone thinks that they can represent those who should be centred is offensive.
It matters, by the way. When our insights are not the ones being heard, we find ourselves in a cycle of misunderstanding and misrepresentation. Our perspective must be heard because it is inevitably comes with the reality of diabetes. When a person with diabetes is asked about why we need to invest in better diabetes care, have better access to drugs and technology or improve funding in diabetes research, we will speak of how improved care leads to better engagement with our healthcare professionals, reduced emotional load and the resulting increased time we can spend with loved ones and being productive at work. We will speak about how increased access can equal decreased burden for us and what that means in our real lives. And we will speak about how research is the gateway for us to have better understanding of our diabetes, helping us make more informed decisions, and speak to how research has changed our lives to date. We speak about hope authentically because we hold onto it with both hands.
Someone speaking ‘on our behalf’ will inevitably focus on reducing burden to the health system (which often makes us feel as if we’re to blame for overwhelmed and overrun hospitals and adds to diabetes stigma) or resort to listing diabetes-related complications, a familiar trope that sounds like a shopping list that does well to scaring us! I spent years being a spokesperson for diabetes organisations and always ensured that the reality of day-to-day diabetes was part of the discussion, not just the rehearsed talking points that tell nothing of the people behind the numbers. Even more importantly, I learnt very early on in my own advocacy when it was not my voice that should be heard and ensured I had a network I could reach into to find the right person. I estimate that about ninety percent of the time I’m asked to give comment, I point whoever is asking in the direction of someone far better positioned to share their lived experience.
This year brought with it a new role where it was essential that I step into the background. I now find myself in the incredibly fortunate position of working with unbelievably brilliant grassroots and community advocates doing truly life changing work with people with diabetes across India. I am not here to tell their stories or about their work. I wouldn’t do it justice – I have more than enough self-awareness to know that. I recognise that they are the protagonists of their narrative. They are the ones doing living the experiences, doing the ground-breaking work, and pushing for change. My responsibility is to be an ally and a supporter, doing what I can to amplify their voices rather than overshadow them. Perhaps this speaks to my own confidence in my abilities as an advocate that I don’t feel threatened by others who are raising their voices. Effective advocacy thrives on collaboration and shared leadership, and I admire those in the advocacy world who willingly take a step back. I think it’s fair to say that others also see those who do that; and also those who do not.
There are more insidious and damaging ways that our voices are silenced. Let’s go back for a moment to our former Prime Minister. I said earlier that he made himself Minister for Women. Except, he didn’t. In fact, he abolished the position and moved it into the Office of PM and Cabinet, removing the seniority and decision-making powers it had previously held. Sure, he appointed Michaela Cash as an advisor, but this was no more than an exercise in tokenism. The reality was that the PM would have final control over decisions affecting women. Abbott bristled when questioned about his decision, refusing to listen to the myriad women and women’s groups criticising the move, instead responding defensively.
I use this as an example when consulting organisations about effective engagement and how to address commentary from the community they work with and for. Receiving criticism can be uncomfortable. However, by being open to how community responds and the feedback they generously offer, it is an opportunity for improvement and collaboration, rather than a threat to be neutralised. It’s incredibly disappointing when organisations respond by attempting to discredit or question the motives and expertise of those with lived experience or suggest that negative comments are part of efforts underpinned with ulterior motives. It’s disheartening to hear implications that individuals offering critical perspectives are merely being influenced by others, disregarding their ability to form independent thoughts and opinions. This is simply another way that community voices are effectively silenced, and proves to the community that contributions from those who should be heard are not valued at all.
I speak a lot about allyship as a pivotal force in including and amplifying rather than excluding and silencing the voices of those with lived experiences. Allyship is an active commitment to placing people with diabetes at the forefront of conversations; featuring them in all levels of decision making; putting them in the rooms where things happen. True allyship involves listening to and acting upon the needs and concerns of people with diabetes, even when what is being said is difficult to hear. What it isn’t is fantastic window dressing. We see right through that.
I wrote this piece while listening to Black Oak Ensembles 2019 album, ‘Silenced Voices’. It’s stunning.
On November 14, the world will literally light up in blue to celebrate World Diabetes Day. And here in Melbourne, an event highlighting one of the most important issues in diabetes today will be held. The entire event will be dedicated to how the global diabetes community is coming together to work to #EndDiabetesStigma. And you can be there!
I’m delighted to be sharing the hosting seat with Dr Norman Swan, physician, journalist and host of Radio National’s Health Report. A veritable A-Team of people from the international diabetes community will be part of the event, sharing their experiences of diabetes stigma and why efforts to end it are so necessary and timely. There will be representatives from the global lived experience community, diabetes organisations and health professionals and researchers. You really don’t want to miss it!
For those able to attend in person, you’ll have a chance to catch up with diabetes mates. Any chance for opportunistic peer support is a great thing and I’m so pleased that I’ll be seeing diabetes friends that I’ve not seen for a very long time.
This isn’t only for Melbourne locals. There will be a livestream for people around the world to watch, share and be part of on social media. It’s free to attend and will be a great opportunity to see the diabetes world come together on a day dedicated to us!
Twenty-five years of diabetes. You bet that’s worth celebrating.
And I did, spending a couple of hours at a local Italian pasticceria with gorgeous family and friends, eating our way though pastries and drinking copious quantities of coffee. Is there a more perfect way for me to celebrate a quarter of a century – and over half my life – dealing with diabetes? I think not!

This commemorative coin was given to me by Jeff Hitchcock from Children with Diabetes. This is the organisation’s Journey Awards’.* What a fabulous recognition of the hard slog that is day-to-day life with diabetes. Of course, here in Australia there are Kellion medals, but these are not awarded until someone has lived with diabetes for 50 years. I love the idea of acknowledging years of diabetes along the way to that milestone, and am extraordinarily grateful to have this one on my dresser at home.
Because really, there is much to celebrate. Getting through the good, the bad, the ugly, the frustrating, the humorous, the wins, the losses, the CGM flat lines, the CGM rollercoasters, the times we nail a pizza bolus, the times we totally botch a rice bolus, the times we exercise and don’t have a crashing hypo, the hypos from out of nowhere, the stubborn highs that make no sense, the visits to HCPs that feel celebratory, the visits that make us feel like crap, the fears of the future and the present, the tech that works, the tech that makes things more difficult, the stigma, the desperation of wishing diabetes away, the horrible news reports, the crappy campaigns that position diabetes negatively and those of us living with it as hopeless, the great campaigns that get it right, the allies cheering us on. All of these things – all of them – form part of the whole that is me and my life with diabetes.
Happy diaversary to me! And thank you to the people along for the ride. How lucky I am to have their love and support in my life.
As for diabetes. I still despise it intensely. I still wish for a life without it. I still believe I deserve a cure. At the very least, I deserve days where diabetes is less and less present.
I am so forever and ever hopeful for that.
More diaversary musings
*More details of CWD’s Journey Awards can be found here. Please note that they are only shipped to US addresses due to postage costs.
‘What would the ideal campaign about diabetes complications look like?’
What a loaded question, I thought. I was in a room full of creative consultants who wanted to have a chat with me about a new campaign they had been commissioned to develop. I felt like I was being interrogated. I was on one side of a huge table in a cavernous boardroom and opposite me, sat half a dozen consultants with digital notepads, dozens of questions, and eager, smiley looks on their faces. And very little idea of what living with diabetes is truly about, or just how fraught discussions about diabetes complications can be.
I sighed. I already had an idea of what their campaign would look like. I knew because more than two decades working as a diabetes advocate means I’ve seen a lot of it before.
‘Well,’ I started circling back to their question. ‘Probably nothing like what you have on those storyboards over there’. I indicated to the easels that had been placed around the room, each holding a covered-over poster. The huge smiles hardened a little.
Honestly, I have no idea why I get invited to these consultations. I make things very hard for the people on the other side of the table (or Zoom screen, or panel, or wherever these discussions take place).
I suppose I get brought in because I am known for being pretty direct and have lots of experience. And I don’t care about being popular or pleasing people. There is rarely ambiguity in my comments, and I can get to the crux of issue very quickly. Plus, consulting means getting paid by the hour and I can sum things up in minutes rather than an afternoon of workshops, and that means they get me in and out of the door without needing to feed me. I think the industry term for it is getting more bang for their buck.
I suggested that we start with a different question. And that question is this: ‘How do you feel when it is time for a diabetes complication screening’.
One of the consultants asked why that was a better question. I explained that it was important to understand just how people feel when it comes to discussions about complications and from there, learn how people feel when it’s time to be screened for them.
‘The two go hand in hand. I mean, if you are going to highlight the scary details of diabetes complications, surely you understand that will translate into people not necessarily rushing to find out more details.’
I told them the story I’ve told hundreds of times before – the story of my diagnosis and the images I was shown to convey all the terrible things that my life had in store now. Twenty-five years later, dozens and dozens of screening checks behind me, and no significant complication diagnosis to date, and yet, the anxiety I feel when I know it’s time for me to get my kidneys screened, or my eyes checked sends me into a spiral of fret and worry that hasn’t diminished at all over time. In fact, if anything, it has increased because of the way that we are reminded that the longer we have diabetes, the more likely we are to get complications. There is no good news here!
‘But people aren’t getting checked. They know they should, and they don’t. And some don’t know they need to. Or even that there are complications,’ came the reply from the other side of the table.
Now it was me whose face hardened.
‘Let’s unpack that for a moment,’ I said. ‘You have just made a very judgemental statement about people with diabetes. I don’t do judgement in diabetes, but if you want to lay blame, where should it lie? If you’re telling me that people don’t know they need to get checked or that there are diabetes complications, whose fault is that?’
I waited.
‘Blaming people or finding fault does nothing. That’s not going to help us here. You’ve been tasked to develop something that informs people with diabetes about complications – scary, terrifying, horrible, often painful – complications. Do you really want to open that discussion by blaming people?’
Yes, I know that not everyone with diabetes knows all about complications, and there genuinely are people out there who do not fully understand why screening is important, or what screening looks like. The spectrum of diabetes lived experience means there are people with a lot of knowledge and people with very little. But regardless of where people sit on that spectrum, complications must be spoken about with sensitivity and care.
The covers came off the posters around the room, and I was right. I’d seen it all before. There were stats showing rates of complications. More stats of how much complications cost. More stats of how many people are not getting screened for complications. More stats showing how complications can be prevented if only people got screened.
‘Thanks, I hate it,’ I thought to myself silently.
I spent the next half an hour tearing to shreds everything on those storyboards. We talked about putting humanity into the campaign and remembering that people with diabetes are already dealing with a whole lot, and adding worry and mental burden is not the way to go. I reminded them that telling us again and again and again, over and over and over the awful things that will happen to us is counterproductive. It doesn’t motivate us. It doesn’t encourage us to connect with our healthcare team. And it certainly doesn’t enamour us to whoever it is behind the campaign.
I wrapped my feedback in a bow and sent a summary email to the consultants the following day, emphatically pointing out that I am only one person with diabetes and that my comments shouldn’t be taken as gospel. Rather they should speak with lots of people with diabetes to get a sense of how many people feel. I urged them again to resist using scare tactics, or meaningless statistics. I reminded them that all aspects of the campaign – even those that might not be directed at people with diabetes – will be seen by us and we will be impacted by it. I asked that they centre people with diabetes in their work about diabetes.
But mostly, I reminded that anything to do with complications has real implications for people with diabetes. What may be a jaunt in the circus of media and PR for creative agencies is our real life. And our real life is not a media stunt.
Disclosure
I operate a freelance health consultancy. I was paid for this work because my expertise, just as the expertise of everyone with lived experience, is worth its weight in gold and we should be compensated (i.e. paid!) for it.
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.














