Diabetogenic

Anatomy of burnout

July 1, 2024 in Awareness, Mental health, Real life, Wellbeing | 6 comments

There are different types of burnout. Diabetes burnout, advocacy burnout, and just plain life burnout.

Diabetes burnout rears its ugly head for many of us living with the condition – sometimes starting as diabetes distress before building and building.

Advocacy burnout seems inevitable the more I discuss it with advocate friends. The living with, working in, supporting others with, diabetes becomes a lot. Too much. So much.

And life burnout seems to be inevitable in the fast-paced, never-pause-for-a-breath, always-switched-on lives we live.

When the three collide it’s a triple threat burnout. Welcome to mine.

The white noise hum of diabetes burnout – always there – slowly, but surely had become amplified. It was little things – I was regularly forgetting to bolus when I ate. Not immediately replacing CGM sensors when one fell off. Ignoring making the follow up diabetes appointments I needed to make, the pathology visit I needed to schedule, the supplies stocktake I needed to do to make sure I didn’t run out of anything.

I’ve been hovering on the edges of advocacy burnout for some time and found myself plunged into it earlier in the year dealing with the complexities that played out as I offered my help and support in some volunteer grassroots advocacy here in Australia.

And life burnout suddenly appeared in the form of exhaustion, but an inability to sleep soundly, and a brain fog that I explained away as a perimenopause symptom. Except it was more than that. It was getting to four in the afternoon before realising I’d not eaten a thing all day. And not remembering if I’d showered, or how many days had passed since I last washed my hair. It was a lethargy that gnawed at me all day long.

I focused on plans for a conference in the US, followed by a few days at work headquarters, knowing that it would be a busy and wonderful time, with a lot of interesting work. I could do it. And I did. The conference was excellent. The diabetes advocates there shone so brightly. And every meeting was a huge success.

Smile. Breath. Smile. Breathe.

Until I couldn’t. That moment hit like a tonne of bricks last week.

I’d spent a day in the office at the job I adore, speaking with incredible people doing so much work. I’m inspired daily by the people I work with and learn so much. There were plans set in motion for exciting things to come and I sat in the meeting room I had set myself up in for the day, feeling satisfied and pleased. The workday done, I packed up and stepped out into the street.

And then, a flash, an instant. Suddenly, the pressure bearing down and around on me was so intense and I felt my chest constrict. I struggled to breathe, and my vision blurred. The sounds on the New York streets suddenly seemed to be coming from under layers of concrete, muffled and hushed and yet piercing at the same time. The bright sunlight seared around me, causing me to shield my eyes from the glare.

‘Breathe. Breathe.’ I felt the rising fright of what I know to be a panic attack, and knew I needed to safely just ride it out. ‘Focus. Focus.’ I looked for something I could hold on to. There it was, a small dog, sitting still, staring dotingly at its human seated at an outdoor café, drinking an iced tea. I stood there, slightly hunched over, my arms wrapped around myself, watching this little dog sitting still. I started to count back from 50, getting to 34 before the dog moved, jumping onto its hindlegs, and resting its front paws on its person’s knee.

It was though the crush from the last few months had all converged. I’d tried in small ways to stem it. I limited my time online, muting more terms and accounts that sought to do nothing but argue and inflame. I welcomed the calmness that descended when my Twitter feed was devoid of people yelling about food choices, and when my Instagram feed only showed me the images of my nearest and dearest. I focused my outside of work advocacy efforts to AID access, specifically on the helpers. I threw myself into my job because it allowed me to focus and celebrate the work of others. I amplified the #dedoc° voices and other advocacy to keep my own away from the spotlight. I thought these things worked.

But at that moment, on the streets of lower Manhattan, those attempts didn’t matter or help. ‘But you seemed fine last week,’ said a friend I’d spent time with at ADA a few days earlier. I had been. I was. I thought about how I appear to others. ‘Sometimes, it’s too much. Right now, it’s too much. Forever… it’s too much.’

I felt the uptick in my heartrate. And realised that had been happening constantly. It had happened after the first difficulty with the grassroots advocacy work, and any time I had to face the source of that stress. Sometimes ‘facing’ meant a comment on a LinkedIn post. Sometimes, it meant a somewhat nasty direct message or, even worse, comments that came to me via others. I realised it had happened every time there was some nastiness or other on Twitter. It happened if there was a confrontation of any time around me, even when I wasn’t involved. Anywhere I saw conflict was enough to kickstart an anxiety response.

‘I’m okay’, I said to my friend. And then, ‘It feels too much.’ I felt myself and my mind and the space around me shatter into a million sharp, craggy pieces. And felt my skin being cut against each and every one of those shards.

This is burnout. This is what it feels like. And with it is anxiety and stress and feeling overwhelmed. We all get it to some degree. Diabetes makes it harder. Diabetes advocacy compounds the whole thing even more. Jet lag doesn’t help. Plus there’s a sprinkling of perimenopause over it all. The culmination is a fragility that scares me a bit and leaves me feeling vulnerable. ‘But you seemed fine…’ my friend had said. And I was. Until the burnout took over. And then I wasn’t anymore.

Very blurry photo of the New York skyline at night. — An accidental photo of the New York skyline, snapped from 21 floors up in the sky. Somehow it captures perfectly how I’m feeling.

Give a crap

June 20, 2024 in Awareness, Real life | 3 comments

Poo, poop, crap, shit – whatever you want to call it, it’s not really a topic for polite dinner table conversation. So, if you’re at a polite dinner table, bookmark this and come back later. If you’re, say, on a flight to Orlando, stick around. I’m writing this on a flight to Orlando. The topic feels somewhat appropriate, but I digress.

This is the one about bowel cancer screening.

It all started back at the end of last year. I turned fifty and was suddenly on government watch lists for screening different parts of my ageing body. I wrote about my breast cancer screening a couple of months ago. Bowel cancer screening was next. I’m writing about this because I know people around my age have been putting off doing this. I get it. This sort of stuff scares the shit out of people, so I’m writing about my experience and hope that might encourage others to stop avoiding things.

Let me tell you something about the people who run the Australian bowel cancer screening program. They are stalkers. They start by sending you a letter. It’s friendly enough, just a little heads’ up (tails up?) that you should be on the look out for their next correspondence: a bowel cancer screening kit to do in the privacy of your own bathroom. Sure enough, it arrived a couple of weeks later, just as the silly season was in full swing and we were planning a trip to Italy.

The kit sat on my desk for a couple of months, and I kept meaning to do it, but travel, work, life and an utter lack of desire to actually collect samples of my poo meant that the kit taunted me every time I sat at my desk. During that time, I received reminders from the bowel screening program. Eventually, I got my shit together and stopped putting it off.

It was all very easy: you run a swab over your stool (which is sitting in the toilet on a piece of biodegradable, flushable paper) and then shove the whole swab in a little container with fluid and cap it tightly, pop the sample in a zip lock bag and then into a padded envelope. Probably the worst thing about it is that you need to send in two samples, from two different trips to the bathroom meaning you have your sample in your fridge until you next need to take a crap. (Because I’m germ phobic, I wrapped the padded envelop in three more zip lock bags, shoved into a brown paper bag. Totally unnecessary.)

The next day after collecting the second swab, I posted my sample and rewarded myself for being compliant (ha-ha) by having a massage.

About two weeks later, my ~~stalkers~~ friends from the screening program sent me another letter. There was blood in my sample, and I needed to urgently go see my GP. On the same day, my GP started sending me text messages and emails urging me to go see him. Now. Today. I was, of course, panicking because of course this meant THE WORST, even though the screening program letter assured me that in most cases there was nothing to worry about. BUT SEE YOUR GP NOW.

In Australia, we have an awesome public health system, but I decided to go private because it meant that I could see the gastroenterologist my GP referred me to, and I got an appointment within a week. I want to check my privilege here, because this option means there is a co-pay. I don’t know the time frame to see someone in the public system. (My breast cancer screening was all done through the public system and that was super quick, so that may be the case with bowel cancer screening too, but I can’t speak to that.)

The gastroenterologist was delightful. He apologised for being exactly seven minutes late. I laughed in diabetes and with the experience of someone who has spent too many hours in doctors’ waiting rooms told him he was, in fact, early. He looked all of about seventeen years old, but I could tell immediately that this was a doctor who knew his shit. And mine too, based on the report he had in front of him.

This was the sort of consultation that goes perfectly. Sensible questions about diabetes; super clear explanations about what was going to happen, and he did all he could to alleviate my concerns, reiterating what my GP and the screening letter had said – in most cases, a positive result is nothing. But blood in a sample will always trigger follow up, and that means a colonoscopy. He scheduled one for three weeks later. I had it on Monday.

It’s hard to put a positive spin on needing a colonoscopy, but I tried. I told myself that I would be getting an excellent afternoon nap on a Monday, and I could pretend I was a rubbish influencer doing some rubbish detox. After twenty-four hours of colonoscopy prep, I was reassured that I am no rubbish influencer and rubbish detoxes are, well, rubbish.

If you’ve not had a colonoscopy, or not familiar with how the prep works, let me explain: The week before the procedure, I was told to stop eating nuts, seeds, beans and red meat, and aim for a low fibre diet. Two days before, my food choices were limited further to white bread, eggs and grilled, skinless chicken and fish. The morning before, I could have breakfast of white bread and then nothing solid after that. But lots of clear fluids including tea and coffee (no milk), lemonade, apple juice, and jelly (but not red or purple). My mum, ever the Italian mamma, made me chicken broth, strained a million times so it was clear and full of nutrients, and that sustained me while I couldn’t eat.

I started taking the preparation at 4pm the day before the procedure. I mixed the first sachet into a glass of water and drank it down over about 10 minutes. It tasted like a fizzy orange drink. I put on some elastic-wasted trousers (I was warned that I didn’t want to be fiddling around with a belt or buttons), sat down in front of episodes of Grand Designs and waited. ‘You will experience extreme diarrhoea’ said the information leaflet. No shit, Sherlock. (Except, lots of shit. Obviously.) The solution kicked in after about forty-five minutes.

At 8pm, I mixed up the second sachet in a litre of water and drank that over an hour. I spent about six hours all up needing to head to the loo very quickly as everything was flushed out of me. Unpleasant, but exactly what was meant to happen.

By 10pm, I felt that I was going to be okay going to bed without having to keep running to the loo, and I slept through until my alarm went off at 7 the next morning. I made up the final prep sachet (same as the first), skulled it and, fasted from 8am until the procedure at 1pm.

Through it all, my diabetes was perfectly behaved. I increased my glucose target on my AID from 5.0mmol/l to 7.5mmol/l and entered a slightly reduced temp basal. My glucose levels remained steady the whole time. There were a couple of instances when there was an arrow trending down, but nothing that a couple of sips of clear lemonade couldn’t fix.

At midday on Monday, we headed to the hospital for what was an exceptionally positive experience with wonderful encounters the whole way through from the admission staff and all HCPs. I laughed at the amazed reaction from the anaesthetist when I handed him my iPhone with the instructions, ‘Swipe right to see my glucose levels’.

I walked into the procedure room, climbed on the table, chatted with what seemed like a cast of thousands and the next thing I knew, I was in recovery waking up. The gastroenterologist popped by to tell me everything went well. I love that he didn’t bury the lede: ‘Renza, you don’t have cancer. It all went well. There was one polyp that we removed and have sent away for pathology. I’ll call you in a couple of weeks, and you’ll need another colonoscopy in three years’. He commended me on the way I’d diligently followed the prep instructions. Apparently, I can be deliberately compliant!

The anaesthetist came by too, still slightly enthused with my tech and told me that my glucose levels were steady throughout the procedure. Diabetes was the least of my concerns and, as I do daily, I thanked the very clever people behind Open-Source AID for making things just a tiny bit easier.

And so, that’s the tale of my bowel cancer screening and subsequent colonoscopy. Absolutely something I would have preferred to not do, but glad that I did. How lucky we are to have these screening programs! It’s the same equation as with diabetes-related complications screenings: early detection, early treatment, best possible outcomes. Plus, peace of mind that comes with knowing there isn’t anything to worry about right now. And isn’t that a really good thing?

Shit yeah!

Yellow pouch with the words 'All my diabetes shit' written in white text — Somehow this seemed appropriate…
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But would we really call that co-design?

May 21, 2024 in Uncategorized | 1 comment

In most cases, the answer to the question in the title of today’s blog post would be ‘no’. At best there might be a nod to some sort of involvement of people with lived experience. Most likely, there would have been some avenue for ‘feedback’ and that would be touted as ‘consultation’ and ‘engagement’. Spoiler alert: It’s neither.

The impact of co-design when done well can’t be underestimated. Have a look at D-Coded Diabetes for one example. This brilliant resource brings together PWD, researchers and clinicians to improve access to and understanding of diabetes research. The development of the international consensus statement to bring an end to diabetes stigma is another example – from its conception right through to the launch event. And this article published in BMJ just last week involved researchers, clinicians and people with lived experience to talk about the importance of uninterrupted access to insulin during humanitarian and environmental crises and was supported by the Patient Editor at BMJ.

I so often hear that initiatives are co-designed, but a look under the hood suggests otherwise. The same goes for when we are told that there has been engagement or consultation. The three terms get bandied around a lot when the truth is that there is so very little involvement at all with the very people who the work is for or about. (More for and about, rather than with and by.)

I grow increasingly frustrated at claims that PWD have been involved, because it’s simply not true. But even more worrying is how these claims are used to throw people with diabetes under the bus. Let me explain.

Not too long ago, a diabetes campaign was set free in the wild. It was not received all that well by many people in the community. I remember being alerted to it with messages from a number of advocates, and a quick look on Twitter and on other socials was all it took to see that many in the community were not too impressed, and they had made their feelings known.

I reached out to someone about the campaign and was told that it was ‘extensively tested with people with diabetes’. That response has stuck with me. Pointing to testing with PWD is, in effect, throwing PWD under the bus. The subtext of that is ‘Don’t blame us. We showed it to PWD.’

The plot thickened when I reached out to a couple of people who had allegedly seen the campaign only to be told ‘I saw it on Facebook this morning for the first time’. While that is troubling, it’s actually not the point. The point is that there is a feeling that ‘testing’ a campaign (or anything else) means that if it doesn’t land well, it’s the fault of the PWD who (probably cursorily) glanced at it. Whoever designed and launched it simply washes their hands of any responsibility.

I didn’t respond to the ‘extensively tested’ defence. But if I had this is what I would have liked to say: Just how much involvement did those people who ‘extensively tested’ the campaign have? Were they involved in the development or were they only brought in after the whole thing had conceived, story-boarded, filmed, been through post-production and was ready to launch? Were any of their recommendations, concerns, ideas taken on board? How and where? How many times did they see the campaign materials before launch date? Are they recognised or acknowledged anywhere as co-designers? Were they paid for their time and expertise? Getting answers to these types of questions forms a pretty good picture of how much engagement truly happened.

It shouldn’t need to be said but testing something – extensively or otherwise is no co-design. It’s not engagement. It’s not consultation. It’s an afterthought.

So is asking for ‘feedback’. By the time there is something to feed back on, too much work without the community has already transpired. My response to being asked to provide feedback these days is ‘No’, followed by an explanation that I am always happy to feed-in when things are being developed, but I refuse to simply feedback to satisfy some token window dressing engagement attempt.

Also, going to the right people for the right project is also critical. This remains one of the reasons that I feel challenged by the idea of community advisory groups. How is it possible to engage with the same people, regardless of the project. Most advisory groups would have a couple of people with each type of diabetes, a parent or two with a child with diabetes, someone from a rural setting. But really, are those people with T1D the best people to engage if the work that is being done is about older adults with T2D in aged care facilities? Or if the work is to do with gestational diabetes education, are parents of primary school-aged kids the best people to provide lived experience expertise?

We have a hashtag in lived experience communities that is a rallying cry. I use it constantly because I love it, but I also often use it because I am frustrated. And that frustration led to this tweet a few weeks ago:

Tweet that reads: #NothingAboutUsWithoutUs isn’t a cute little slogan to be used mindlessly. It’s a battle cry, a demand for meaningful engagement, an expectation that lived experience be centred and recognised as expertise.

Saying #NothingAboutUsWithoutUs is how our lived experience community advocates for true community involvement and meaningfully change the status quo. We are the ‘us’ in the hashtag. The #dedoc° team uses it a lot because it forms the basis of so much of our organisation’s work. It is not okay for others to appropriate the term, seemingly hoping that it will lend them some credibility with PWD. It won’t.

There are stellar examples of how co-design works and can be truly branded with the #NothingAboutUsWithoutUs hashtag. The work that has been underway by a community group, to progress equity in access AID is one current example. The meeting in Florence that kicked this work off didn’t actually involve community. And yet, from there, a couple of endos in the meeting reached out to the community to put together a plan to make change that has a seat for everyone at the table. (And the fact that over 4,400 community members have signed this petition suggests that it resonates!)

It can be done! If you need some ideas for where to start, we really can’t make it any easier. Here are some guidelines that were launched earlier this year Jazz Sethi and I collated. It’s a really useful guide for how to kick things off. I think it’s time that we start asking questions when there is a claim of engagement. Let the burden of proof on that lay with anyone making the assertion. Because it’s easy to see when it’s done well. And even easier to see when it’s not.

That extra degree of difficulty

May 13, 2024 in Babies, Diabetes, pregnancy and diabetes, Real life, Women's health | 2 comments

Eleven years ago on Mother’s Day, my friend Kerry started something on her socials. Kerry’s mum sadly died when Kerry was just six years old. She doesn’t have a single clear photo of the two of them together. And so, Kerry has urged her mum friends to make sure they take a photo with their kids – a really simple and special way to make sure that memories are recorded. (You can search for #KTPhotoForMum to see some lovely shared posts.)

We’re not short of photos in our household – who is in the age of smart phones? – but I especially love the album that I have of Mother’s Day photos of me and our girl. Seeing her on this day for the last eleven years brings a special feeling of joy.

But there’s another feeling in there that I want to recognise, and that’s how proud I am. Of course I’m proud of her – she’s a marvel (excuse my bias). But I’m talking about hoe I feel about myself as a mother living with diabetes. Because pregnancy and parenting with diabetes is not an easy gig.

I struggle with this sometimes. I don’t want to be defined by being someone’s mum. I achieved a lot before I became a mother and have done plenty in the last (almost) 20 years that I am so very proud of. There’s travel and a career, and media work, lots of published writing and a whole lot of standing on stages talking diabetes advocacy. These are usually the things that I point to when thinking about my achievements. For some reason, I’ve felt it’s diminishing to point to motherhood as an achievement.

But the truth is, that motherhood with diabetes is an achievement and it is defining in some ways. Conceiving, growing a baby, bringing her into this world, and getting her to adulthood is something that carries a huge sense of pride. Because, damn, diabetes made that hard. Every stage of it.

I get it: pregnancy is natural and it’s been happening forever and there are bazillions of people who have done it for a bazillion years, but there is absolutely nothing natural about taking on the role of a human organ. Seriously! It’s hard at the best of times. Being pregnant adds a degree of difficulty that is incomprehensible until you’re in the midst of it. Even today with tools that are far more sophisticated than the basic pump that saw me through my pregnancy, it’s still not easy. (And I utterly recognise how lucky I was at the time having a pump. The women sitting next to me at the Women’s Hospital diabetes & pregnancy clinic on Wednesday mornings who weren’t using a pump were real magicians.)

At that time I was just so in the weeds of dealing with all that came with a diabetes-complicated pregnancy that I never thought what an incredible job I was doing just getting through it. After all when was I meant to cheer myself for the remarkable effort? Was it before or after the 20+ finger prick checks I was doing each day? (CGM wasn’t around then.) Or alongside the complex calculations that I needed to complete before pre-bolusing the right amount of insulin at the exact right time? It certainly wouldn’t have been during the thirty percent of the day I was below target because in those moments, I was too busy worrying about starving my brain (and baby) of oxygen.

And then there was no time after she came along, because babies are all encompassing and take up every moment of the day. And diabetes can also be all encompassing and is incredibly demanding.

I had no time to be a cheerleader for myself because every single part of me was focused on making sure my baby’s elbows were growing properly, and stressing about how any out of range glucose level was harming her growing organs. Any spare brain bandwidth was taken up feeling guilty because I never felt I was doing enough. I felt that I was probably already failing my child. Even though her elbows are beautiful (and her organs seem fine), I still carry that guilt. Almost twenty years later.

These days, as more people with diabetes share their pregnancy and parenting stories, I DO cheer. Every time I hear about chaotic first trimester hypos, and managing glucose levels around second trimester cravings, and third trimester insulin-resistance frustrations, I know they deserve a loud ‘Hurrah!’ and so I cheer. Because look at these amazing people! Look at what they are doing – the work, the emotional rollercoaster, the determined effort they are putting in to keep themselves and their baby safe! Diabetes never plays nice, and for so many, pregnancy is the most difficult time in someone’s diabetes life.

Yesterday morning, I looked at our daughter as we had our Mother’s Day breakfast in the sunshine. Having her is the hardest thing I have ever done – the hardest, the most emotionally challenging, the scariest – but also the absolute best and I am so very proud that I did.

This post is dedicated to my dear friend Kati who I am cheering for every day!

Black and white photo of me holding our baby daughter when she was only a couple of weeks old. — She doesn’t look like this anymore!

Emma Bates

April 26, 2024 in Diabetes | 9 comments

Is there no limit to what people will blame on diabetes?? Because apparently now it’s being blamed for the death of a woman after she was violently assaulted.

Emma Bates, a 49 year old woman from Cobram (a country town in Victoria) was found dead in her home on Tuesday. She had serious injuries to her head and upper body after being allegedly bashed by a neighbour.

Friends and family have spoken about Emma and in their tributes, we learnt that she loved cats and was always helping people in her community. She had six siblings and was affectionately known in her family as the ‘crazy cat lady aunt’. It’s important to think about these sorts of things, because while we’re Counting Dead Women in Australia it’s far too easy to get lost in the horror of a rapidly increasing number, and stop centring the women behind each and every one of those numbers.

Emma also happened to live with type 1 diabetes. And because she lived with type 1 diabetes, the man who allegedly assaulted her has not been charged with manslaughter or murder because there’s uncertainty if it was the horrific injuries he’s been accused of inflicting or her diabetes that caused her death. His 13 charges include intentionally causing injury, recklessly causing injury, aggravated assault of a female and unlawful assault. This from an Australian newspaper:

‘… police told the family that murder or manslaughter charges were “off the table” after an early post-mortem examination was inconclusive about Bates’ cause of death.

She said the examination could not confirm whether Bates’ injuries caused her death, or whether her illnesses had played a part.’

Diabetes gets blamed for fucking everything.

Emma Bates. Say her name. Remember her name. She was one of us, one of our community. She lived with diabetes. And now it’s being used to diminish the severity of how her life ended.

Enough from me…

April 24, 2024 in Advocacy, Awareness, Community, Devices, Diabetes, Lived experience, technology | Leave a comment

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.

Forever searching for community

April 22, 2024 in Community, Real life | 2 comments

Living with diabetes has made me acutely aware of the importance of screening. Eye screening, kidney screening, neuropathy screening, mental health screening – they’re all part and parcel of my diabetes care.

In my mind, screening is a non-negotiable because I live with a chronic health condition that refuses to stay in its lane, instead, spreading the love around. And by ‘love’ I mean ‘puts a heap of other things at risk’. Diabetes, the gift that keeps on giving.

Similarly, I’ve always (mostly) been on the ball on cervical screening. Regular Pap smears were booked in every two years. Cervical screening is different now. It’s done every five years (yay!) and is expected to protect almost a third more people from cervical cancer than the Pap smears of old (also yay!). AND there’s a DIY version for those who would prefer. I love it when progress makes unpleasant medical procedures slightly less unpleasant!

After last year’s BIG birthday, I knew that there would be more screening, and sure enough, almost before I’d blown out the last candle on my drawn-out birthday celebrations, both the Australian and Victoria Governments were sending me love letters to help me protect my health. The Australian Government’s bowel screening program came with a kit to do the screening at home. And the Victorian Government sent me a letter, urging me to make an appointment for a breast check.

Diligently, I did just that and had a mammogram at a local BreastScreen Victoria centre. That was about three weeks ago. I didn’t think about it again until I was about to board a long-haul flight home and opened an email asking me to come back for a follow up appointment. There were changes on my screening mammogram that needed to be investigated further. I had a fun 30-hour transit home imagining every possible catastrophic scenario (because: melodrama) and have spent the last week and a half oscillating between ignoring things and stressing over them.

And that brings me to today. This morning, I had my follow up appointment, and the short story is all is fine. (The very slightly less story is I had a 3D mammogram, my breasts contorted into expert-level origami configurations, and a million images taken to show that all is okay. Come back in two years.)

Walking back to the car, I took deep breaths, scolded my stupid brain for insisting on making things bigger and scarier than they ever need to be, and then reminding myself that I should be kinder because it’s not just this screening that was influencing how I felt.

I don’t know what it’s like to not live with a chronic health condition that places so many expectations for regular health checks and pressures on my mental health. Honestly, I wish I did. Because I know that the way that I am feeling – the anxiety, the stress, the worst-case-scenario obsessing – is so shaped by twenty-six years of living with diabetes. I can’t switch off these feelings or react differently. I can’t force myself to think of things through any other lens, because everything I see is through diabetes-coloured glasses.

This is the reality of living with diabetes. And it’s the legacy of scary images and campaigns and messaging that told me it was all inevitable. Of course I’m going to expect the worst because I heard that all for so very long. It wasn’t a giant leap for me to head straight to thinking the worst thing about a call back following a mammogram.

And so, because community is everything to me, as soon as I could I reached out to a friend who has had breast cancer. I needed to connect with someone with lived experience. Who better to try to talk through things? And the next person was a friend with diabetes who had recently had an experience that pretty much mirrored mine (and the same outcome). Of course I read everything I’d been sent from BreastScreen Victoria, but I needed to humanise the situation. And the only way I could do that was by speaking with people with lived experience, who could climb in beside me and wrap me up in a quilt of understanding and reality. Community really is everything. – whichever community it is.

WHILE WE’RE TALKING COMMUNITY…

If you’ve not yet shared and signed the petition for equitable access to AID for Australians wth T1D, please do! This is a community-driven initiative, created by people with diabetes in consultation with other stakeholders who have come together to advance advocacy on this issue. It’s getting close to 1,500 signatures already, and I’m seeing it shared widely in community groups and organisations. Thanks to everyone who has supported the community by being part of this advocacy.

Sign here…

April 19, 2024 in Advocacy, Awareness, Community, Devices, Diabetes, DIYAPS, Engagement, Loop, Pumps, Real life, technology | Leave a comment

‘Why would you bet against the type 1 community?’ That was a question asked in a session at the ISPAD conference a couple years ago. It wasn’t someone with T1D drawing attention to the community. Instead, it was said by someone working in global health who had seen the remarkable efforts such as the #WeAreNotWaiting movement and grassroots, peer-led education initiatives in low-income countries. These efforts have driven change and improved lives of people with diabetes. They have been led by those with lived experience and supported by other diabetes stakeholders. But the starting point is people directly affected by diabetes identifying a problem, solving it and leading the way. In the history of diabetes – from the first home glucose meters, to building systems leveraging off existing technologies, to global advocacy movements – community powered initiatives have been a driving force for change.

And so, here we are today, coming together once again to advocate for better equity and fairness for all people with type 1 diabetes, this time in Australia, and this time advancing access to automated insulin delivery devices (AID).

Insulin pump funding is broken. AID is standard care and yet far too many people are left unable to use the tech because of how pumps are funded in Australia. Right now, unless a person with T1D has the right level of private health insurance, or meets the criteria for the Insulin Pump Program, they must find the funding for an insulin pump. That needs to change.

We know how to do this in Australia. The reason that pump consumables are on the NDSS is thanks to community advocacy efforts back in the early 2000. And more recently massive community noise helped to get CGM onto the NDSS for all Australians. Of course, these wins worked because everyone was involved in advocacy: people with lived experience of diabetes, healthcare professionals and HCP professional groups, researchers, diabetes community groups and organisations and industry. What a lot of noise we can make when we’re singing from the same song sheet!

Right now, attentions are razor focused on improving access to automated insulin delivery systems because the evidence is clear: AID reduces diabetes distress, improves quality of life, and (for those who like numbers!), help with glucose levels. And as an added bonus for the bean counters – it’s a smart, cost-effective investment for our health system.

If AID is standard care, financial barriers preventing people from accessing it need to be eliminated.

And that’s where we would love your help.

Please sign and share the petition that has been started by Dr Ben Nash and supported by a group of people with T1D (including me). Petitions are a great way to get people talking and interested in a topic. It builds momentum and helps contribute to whole of community conversations. While we know the T1D community is already on board, we’ve now seen a number of HCPs, community groups and diabetes organisations share and promote the petition and are keen to get involved with broader advocacy efforts. That’s pretty cool!

Postscipt:

Understandably, there are questions about why this work is specific to T1D technology access. That’s a fair question and I think that our very own Bionic Wookiee provided an excellent explanation of that when he said this in a social media post earlier this week:

‘AID systems were developed for T1D (where they can track all the insulin going into the system without having to cope with the body’s variable insulin generation). So right now they mainly apply to T1D…

Expanding CGM and pump access to people with other forms of diabetes than just T1D is important for the future. Having wider access to AID for the T1D population will be a beach-head for that.‘

And in a conversation I had about this with UK diabetologist Partha Kar yesterday he cautions that there needs to be a starting point because the sheer numbers of diabetes can be daunting and tend to scare policy makers. He also points out that when it comes to outcome modifying interventions, technology is THE thing in T1D, whereas in other types of diabetes there are other options. I’ll add that those other options often have stronger evidence which is why they already have funding.

Diabetes past, present and future

April 15, 2024 in Diabetes, Diagnosis, Real life | 2 comments

Anniversaries – diaversaries – are for remembering. And today, my twenty-sixth diaversary, I’ve remembered that diagnosis day, and a lot of what has happened since. I’ve had a sensor fail. I’ve also enjoyed doughnuts, coffee and sunshine, and an AID so smart it has cleaned up all my diabetes incompetence and delivered a day of 95% TIR. Measure for measure, it’s been a good day!

My life would be impossibly different today if diabetes hadn’t moved in all those years ago. So much of my life, and so many of the people in it, is because of diabetes. The utterly confused and terrified twenty-four year old woman who walked out of a GP appointment after a diagnosis of T1D would never have believed the turn my life would take after I fell head first, and completely accidentally, into a life of diabetes advocacy. She wouldn’t recognise who I am, or how I fill my days and the people alongside me, the never-ending decisions I am forced to make, or the ever increasing stamps in my passport. She wouldn’t understand the normal that is my every day. But in the same way, I don’t remember her normal. (And thanks to Effin’ Birds for so beautifully illustrating that for me…)

Diaversaries are for remembering, but they are also for looking forward. Advocacy features so overwhelmingly in my future (and my present – I’ve spent a day off today working on an Australian grassroots community campaign). And so does advocating beyond our borders with the global access work I am so honoured to do at JDRF. And that means looking forward to people with a shared vision for real community and community involvement in ways that are meaningful and impactful. When I think of the last twenty-six years, community and others with diabetes feature so strongly. Because community is everything.

But perhaps most of all, diaversaries are a good opportunity to be hopeful. Advocacy has shaped who I am and how I have lived with diabetes, but hope has too. It’s as much of a driving force as anything else, something I hold on to every single day. I’m hopeful that access to diabetes care, insulin and other meds and technology becomes more equitable and that the heavy burden of diabetes casts an ever-diminishing shadow.

AID access in Australia

April 5, 2024 in Advocacy, Awareness, Community, Devices, Diabetes, Lived experience, Loop, Pumps, technology | Leave a comment

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.)

At ATTD, I gave a talk for the launch of the Global Diabetes Advocacy Network about the critical role held by people with lived experience when it comes to diabetes advocacy and why organisations must centre our experience and expertise in their own advocacy efforts.
I’m introduced most generously by Adrian Sanders, Secretary General of the Parliamentarians for Diabetes Global Network.