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Yes, we know that diabetes is a so-called invisible condition. I’ve written about it a lot both here (and here, and here, and here) and other places as well. And I’ve also grappled with how I feel when I realise that my carefully and deliberately shrouded condition actually becomes visible without me knowing it.

Our diabetes does not wear a cast or make us immediately look different in any way. We are not identified as someone with diabetes until we tell someone that is the case. Even when diabetes is impacting on us in the moment physically – for example if we are actively dealing with a low or a high – and there are around others, most people would not automatically think ‘diabetes’.

As a condition that can be hidden, diabetes is referred to as invisible. But lately, I’m not sure how comfortable I am with this idea, because I think it is a little murky when thinking about just whothe condition is invisible (or visible) to.

So I decided to ask a few people what they thought: people I know well, family members, work colleagues, friends and acquaintances. Just about everyone I spoke to said that they thought diabetes was invisible. They said that rarely would they think diabetes when around me, unless we were specifically talking about it, or they noticed me ‘doing diabetes’. Someone I asked actually said ‘Oh, I forgot you have diabetes,’ which I guess points to just how invisible some people see (or rather don’t see) my diabetes.

The only people who said they didn’t think diabetes was invisible were friends with diabetes. ‘How could I think that?’ someone said. ‘No one living with diabetes thinks it’s invisible. It’s always in our face.’

That’s exactly how I feel. When we say diabetes is invisible, what we are saying is that it is invisible to others. The invisibility cloak only applies to people looking at us, not those of us whose diabetes is under that cloak. For us, it reminds blindingly visible and present. It’s the devices on our bodies (even if we hide them under our clothes); it’s the scars from puncture wounds; it’s the always-present glucose meter; it’s the blood stains from pricking our fingers or removed CGM sensors or pump lines; it’s the glucose strips that get into every crevice of our homes, our cars, our pockets, our bags, or workplaces; it’s the alerts and alarms that sound from our phones and devices; it’s the pop up reminders of medical appointments or to fill repeat prescriptions or pick up NDSS supplies. And they’re just the things we can see and hear, not taking into consideration the constant presence of diabetes in our minds, our hearts, our souls…our very being.

To a degree, we can control just how visible we want diabetes to be to others. Personally, I like that I can chop and change how noticeable the physical signs of my diabetes are. Today, I am walking around in a tank dress and the Dexcom on my arm is obvious for all to see. But throw a denim jacket over it and it disappears, sending my diabetes incognito.

For some people, making diabetes invisible is important. Others like it to be front and centre. There are myriad reasons for making decisions around this, and those decisions and choices will be different for everyone.

I do wonder how much of that decision is made exclusively by the person living with diabetes, and how often we change the level of visibility based on what we believe others may expect. Are we wearing our diabetes loudly because we feel we have to or because we feel we should? I know I have been the loud, out there advocate because I’ve felt I should be.

Or is there something about the shame and stigma of diabetes that makes people want to hide it away? Or are we trying to minimise the visual, or audible signs of diabetes to protect others? Or to stop others from feeling burdened, bored or worried about our diabetes? I also know I do that a lot.

But try as we might, for those of us living with diabetes, we cannot conceal it from ourselves. It lives with us, in us, around us. And it is always visible.

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I spent a lot of the weekend feeling a little sentimental. Our beautiful girl turned 14 and as usual, we reminisced, telling the story of the day she was delivered. And I reread my pregnancy diary, the feelings of intense excitement, anxiety, fear and anticipation flooding back. I remembered how, 14 years ago, the only way to check glucose levels was to do blood glucose monitoring. And I was doing that up to twenty times a day. My poor, poor fingers.

While I was remembering all this ever the weekend, I was holding onto an embargoed secret, knowing that an announcement about the expansion of the current NDSS CGM funding program was about to made. In between organising a weekend of birthday celebrations and wrapping gifts, I was also planning for the media announcement which would be taking place early on Sunday morning at a local women’s hospital. I took breaks in preparing food for Sunday’s birthday lunch and read running sheets, familiarised myself with the ‘talent’ who would be explaining what the new funding meant to them, and made sure that I knew where I had to be at 8.30am the following morning.

And amongst all that, I prepared myself for what I knew would be coming: disappointment. There would be a lot of disappointment because the funding package was not going to include everyone, and those who missed out would be upset.

This is my personal blog, and although I work for Diabetes Australia, this is about my own life with diabetes, and to a degree, my life around diabetes. I write a lot about what is going on in the ‘diabetes world’ – both in Australia and more broadly. Sometimes what I write is directly applicable to me; other times, it’s not.

Today, I am writing about the announcement that was made yesterday and I guess that the line between personal and professional is potentially going to get a little murky. Please read my disclosures at the end of this post carefully, because my bias needs to be strongly acknowledged – by anyone reading this piece… and by me while writing it. But I hope that also, people understand that I need to write about this personally too.

In a nutshell, yesterday’s announcement delivered an extra $100 million dollars to fund CGM to women with type 1 diabetes planning for, during and after pregnancy;  people aged 21 years and over who hold a concession card (and meet clinical criteria); and children and young people with ‘other insulin-requiring diabetes’ (for example, cystic fibrosis-induced diabetes). This is all on top of the current $54 million funding which provides free CGM products to children and young people up to the age of 21 who meet the clinical criteria. Also, Flash glucose monitoring has been added to the list of products available, meaning more choice for people with diabetes.

This is good news.

And yesterday, as I chatted with women with type 1 diabetes who had just had babies and were planning more, or were currently planning for a pregnancy, I knew just how much of a difference having access to this technology would mean to them.

Kelly and baby Grace with Health Minister, Greg Hunt, and CEO of Diabetes Australia, Greg Johnson.

I thought back to when I was pregnant and how it would have been so much easier had CGM been available then.

How wonderful that these women, and thousands of other women like them can breathe just a little easier knowing that they will be supported with this tech while planning and during their pregnancies – and the period afterwards. Oh – and then I remembered breastfeeding hypos, the jars of jelly beans on every flat surface in our house – including the back of the loo – and how, when home alone, I used to feed our baby girl on the floor in case I had a bad low and dropped her. CGM alerts and alarms would have been so brilliant then!

CGM is out of reach for so many people. It is expensive technology and I know there are people making sacrifices to be able to afford to use it. I know what that is like – back before pump consumables were on the NDSS, we had to budget $300 per month for lines and cartridges, tightening our spending on everyday items, forgoing holidays, meals out and other things we wanted to do so that I could continue to drive my pump.

Is it fair that the technology we use to keep us alive means we need to make such sacrifices. It certainly doesn’t seem so. And I know that is how people are feeling after the funding announcement was revealed yesterday.

Am I disappointed? To a degree, yes, I am. I believe that I, and other people with diabetes like me are every bit as worthy as women with T1D planning for to have a baby, and kids and young people with type 1 diabetes, and adults on healthcare cards. I completely disagree that type 1 diabetes is harder for kids than it is for adults, because actually, type 1 is tough at any age, and each age and stage of life has its own particular challenges.

But I refuse to see yesterday’s announcement as anything other than a positive step in the right direction, just as I saw the initial funding for children and young people a good thing.

People have missed out; people who will still not be able to afford CGM; people who desperately need this technology to live the best diabetes lives they possibly can. And that’s why yesterday is not the end to the CGM funding story. In fact, it’s a new beginning.

Also, I think it is important to point this out: An announcement like this does not happen quickly. It comes from years and years and years of work. CGM  has been in Australia for over ten years now. Yes – that’s right. Over ten years. So when you hear people referring to this as new or emerging technology, or saying it wasn’t around five or six years ago, that’s rubbish.

I can remember that pretty much as soon as CGM was launched into Australia, Diabetes Australia and JDRF Australia started to fight, lobby and advocate for this to be funded. How do I know this? Because I sat in meetings back then as we tried to nut out just how to approach the government for funding. What would work? What sort of model was achievable? How would the people who were most at need benefit? There are no easy answers to these questions. All we have to rely on is evidence and what the evidence shows is that there are some groups that benefit most from CGM technology.

Diabetes Australia, JDRF Australia, the Australian Diabetes Society (ADS), the Australian Diabetes Educators Association (ADEA), the Australian Paediatric Endocrine Group (APEG), and the Australian Diabetes in Pregnancy Society (ADIPS) have worked together to form an alliance to provide evidence-based submissions and information around CGM technology (amongst other issues). Why is this important? Because bringing together the peak consumer bodies with the peak professional bodies means that all stakeholders are represented, and it’s pretty hard to disagree when we combine PWD sharing our own stories for why this tech matters alongside HCPs talking about the clinical benefits.

At no time has this alliance ever pushed for anything other than funding for those with high clinical need. The idea of an upper age limit was never, ever promoted by this group – we never fought for access to be only for children and young people. Our original funding submission is a matter of public record and can be seen here and you can clearly see that we were advocating for what the evidence pointed to.

I am proud to have been a part of this work – for over ten years now. It is the very definition of ‘slow burn’. This slow burn is not all about being in the public eye and yelling about what we do. In fact, it is all very much out of the public eye. It’s monotonous at times; it can be repetitive and it takes time.

Yesterday we celebrated. Today we’re back at work, looking to how we get the next bit of funding secured.

And finally, we can yell and stamp our feet and say that we should have fully funded CGM for all people with type 1 diabetes. But that is never going to happen. If we look to other countries where there is funding available to people with diabetes of all ages, there is still clinical criteria that must be met in order for people to access reimbursed sensors and/or transmitters. Nowhere has a policy where anyone and everyone with type 1 diabetes can simply show up, put out their hand and be given a CGM. Instead, clinical need is used to determine who has access. I think that we need to be realistic about expectations of what funding will look like in the future.

DISCLOSURES

I have worked for Diabetes Australia since January 2016, and prior to this role, worked at Diabetes Victoria for over fourteen years. I have been involved in CGM funding submissions from Diabetes Australia and the alliance which includes JDRF, ADS, ADEA, APEG and ADIPS. I was also on the Department of Health’s implementation Committee after the initial $54 million CGM funding was announced. I have been involved in writing information and education resources about CGM and hosted a number of national webinars after CGM products were first listed on the NDSS. I have spoken at technology events held at Parliament House, sharing my personal experience of why I use CGM, and, more broadly, why this technology is beneficial to many people living with diabetes.

I use CGM full time. I do not receive any subsidy or discounts for using CGM, and fully fund transmitters and sensors myself. I am fortunate to have friends in Europe who have occasionally provided me with sensors when they have spares, and I am currently using a re-batteried Dexcom G5 transmitter. At the beginning of November, I spoke at a health professionals workshop for ADS where I demonstrated how to use the Dexcom G5, and was provided with one sensor for this demonstration.

The cutest baby ever.

ADATS on Friday was a great day of diabetes technology and treatment advancements.

There was a lot about automated insulin delivery (AID) systems, which, when you think about it, is really what is at the cutting edge of available diabetes therapies in 2018. David Burren, the Bionic Wookiee, gave a keynote on his experience using DIYAPS and why it works for him. And smart endocrinologist Dr Barbora Paldus gave what I heard was a fabulous talk about different AID systems, including what is coming onto the commercial market as well as DIY systems, and providing details (using terminology that made sense to everyone!) about the different algorithms. And fuzzy logic. I’m so annoyed I missed her talk, but it was on at the same time as the session I was chairing (and it’s bad form for the chair to leave the room to go to hear other speakers).

Before going any further, let me say this – not as an statement of tokenism, but as absolutely heartfelt and something I believe one hundred percent. We can talk about systems that automate insulin delivery with the aim to improve diabetes outcomes, but until these are affordable, accessible and available for everyone who wants to use them, we must acknowledge that these technologies will not be able to be used by most people with diabetes. Everyone ‘working in diabetes’ has an obligation to work towards improving access and affordability to minimise the ‘haves’ and ‘haves not’ landscape that we are already seeing, and will see even more in the future.

I chaired a session that focused on the current MiniMed 670G system trials underway in Australia and then hijacked the panel discussion in the afternoon about the topic because the consumer rep. had to leave early. So, where are we with approval for this system (and how long before lucky people can get their hands on one)? Well, the pump is now approved through the TGA, however is not being provided to PWD yet. The new sensor has not received approval yet, and the system as a whole has not either. Medtronic Australia is saying that they are hoping it will be available by the end of the year. The approval process is out of their hands, but I know they are working super hard on their end to get this to PWD as soon as they can.

I have spoken with a few people who have done the trial here in Australia. We need to remember that trial conditions are often not ‘real life’ conditions, so what I am writing about today does not necessarily reflect the experiences of people using the 670G every day and outside of trial conditions. (The system has been launched in the US and there are lots of stories online from people who have chosen to use this system and I would encourage anyone thinking about using it to search for and find what they have to say.)

Research guinea pig and 670G study participant, Leanne Foster.

The session last Friday was comprehensive in that it included presentations from HCPs in the private and public sectors, adult and paediatric settings, a dietitian, and (thankfully) a psychologist. For me, the highlight was hearing from self-proclaimed research guinea pig, (and friend for over fifteen years) Leanne Foster, who has been a long time diabetes technology study participant and was involved in the study.

From listening to the details of the study design, this was not trial for the fainthearted! There were significant demands placed on participants, and expectations were high. To be clear, participants were not given the system, provided with a bit of training and sent on their merry way to simply live alongside the device back in their everyday world. There was a lot of logging, counting, device wearing (not just the pump and CGM that make up the 670G system).

I think it is important to mention this, because one of the themes that was repeated by several speakers was that for many participants, their own burden of diabetes – how much they thought about their diabetes and what they were required to do – increased while using the system on the trial.

It is also important to mention that this is a first generation device. The system that will be launched here is likely to be the same as the one in the US, yet there have already been more sophisticated and aggressive algorithms developed and tested as part of this trial.

While possibly unfair, it is impossible to not compare experiences of people using the 670G and DIYAPS, because these systems are endeavouring to do the same thing: automate insulin delivery, increase TIR, reduce what the PWD is required to do.

And there were some things that struck me as really widening the gap between the two systems.

Firstly, the concept of added burden was astounding as my personal diabetes burden is the lowest it has ever been in the twenty years I’ve lived with diabetes. Since Looping, I think about diabetes far less than I did beforehand.

That burden is not only applicable to PWD. Many of the HCPs who presented said that they found themselves required out of hours significantly more with people using the 670G. I have not once called my HPC about any diabetes-related matter in the last 15 months I’ve been Looping. Obviously, I wouldn’t be contacting her if there was an issue with the system, but I’ve not contacted her for any general diabetes trouble-shooting that would result in me making changes to any of the settings on my tech.

There was a lot of talk about the 670G system ‘booting out’ of auto mode, meaning that automated insulin deliver doses stop, instead going back to the fixed basal rates set in the pump. This happened every day for many people; several times and for a number of hours at a time. I can say that in my experience, my system loops continuously. There are extremely rare times where my green circle turns red, and the pump reverts back to delivering what is set as my basals. But I am always able to troubleshoot by following a few basic steps and Loop will inevitably return to green.

One thing that struck me, was the number of times we heard about the system struggling to cope with the day-to-day lives of the trial participants, and the only way around that was for them to amend their behaviour. There was one moment that had me sitting there in disbelief when I heard the example of one trial participant who was having recurrent lows overnight and the only way to remedy that was for them to have 10g of carbs before bed. Suddenly, I was thrown back to 1998, being on Protophane and Act Rapid, and the only way I could keep horrid night-time lows at bay was to have a glass of milk with corn powder before bed. (Anyone else do that?)

The very idea that new devices being developed will require PWD to change their behaviour for said device to ‘cope’ with our real life is astonishing! This is, without a doubt, a step backwards in my mind. I know that my experience of Loop is that it has easily been able to adapt to my incredibly un-predictable life that includes far too much travel to different time zones, a varied and sometimes erratic diet and days where I have walked 30,000 steps with others where I’ve been horizontal for most of the day. I haven’t had to modify my behaviour in any way to please my Loop, and I’m not sure I would be so enamoured by it if I did.

What is definitely not a step backwards however – in fact it’s a monumental leap forward – is the potential of this technology and technology like it. As a convert of automated insulin delivery systems, the idea that people will be able to soon access devices that commercially available, under warranty and supported by the company’s customer service is only a great thing. Not everyone wants to build their own system, not everyone is comfortable using a DIY system, especially if they don’t feel they have complete support of their HCPs. Once the 670G becomes available, many of the concerns PWD have will be alleviated. Adding choice is only ever a good thing.

But perhaps the most telling sentiment about how the technology impacts on real life came from Leanne. She loved the idea and experience of automated so much (even with all the disclaimers of the trial requirements) that when she was forced to hand back the 670G system when she finished her part of the trial, she as having none of it! After begging to keep hold of the system (which she knew simply could not happen), she had everything ready to go to build her own DIYAPS and has happily joined the Loop family for now. The capabilities of the 670G technology – the automation and the results – such as the improved sleep – were too much of a good thing and she was not prepared to go back to what she had beforehand. And THAT is telling.

Automated insulin delivery panel. L-R: David O’Neal, Sue Wyatt, Kerryn Roem; Jane Speight, Tim Jones, Spiros Fourlanos, me, Jane Holmes-Walker, Melinda Mus

Disclosure

My flights from Melbourne to Sydney were covered by the National Association of Diabetes Centres (NADC), the organisers of ADATS. I am on the organising committee for the conference.

I am not involved in the Medtronic MiniMed 670G trial. I have worked with and consulted for Medtronic on other projects.

I’ve been thinking a lot about motivation recently; specifically, how we remain motivated living with a lifelong health condition that places so many demands upon us. It’s something I also get asked about a lot by others with diabetes – often people newly diagnosed: ‘How do you stay so motivated.’

It’s all smoke and mirrors, because the truth of the matter is that most days, my motivation to ‘do diabetes’ is very low. In fact, I think that there is a spectrum of motivation where zero is ‘What diabetes?’ and ten is ‘I log everything…EVERYTHING…ask me how many carbs I ate yesterday and what my BGL was at 3.10pm and 5.55pm. Go on…do it. Because I can tell you. Do it. Ask me. And also, yes! I can tell you why my glucose levels spiked at 10.12am three months ago on a random Tuesday. Also, look at this: it shows how my glucose levels are impacted by the phases of the moon. In other news…here’s my last fifteen years of A1cs displayed pictorially, but I can also demonstrate them using interpretative dance if you would like me to. Would you? You would, right? Let me just find my Kate Bush playlist on my iPhone…

Generally, I’m a solid 3.5. I don’t do graphs, I have a vague idea of what my CGM is telling me now-ish, and I can tell you my A1c to within about 0.5 per cent. I call this winning.

I have had periods – extended periods – where I am far closer to zero, which have not been great because that has added ‘not-doing-diabetes-guilt’ to the simple ‘not-doing-diabetes’ which basically equalled feeling crappy all around. And I’ve also been closer to ten – this, for me, was called ‘pregnancy’ – and I was borderline obsessive.

Someone recently asked me if I thought there was a secret to staying motivated. I don’t think there is, because surely, at least one oversharing blogger would have written about it by now.

But I do believe there are small factors that, when combined, do make it easier to remain, if not enthused, at least stirred to keep chugging along with diabetes.

Firstly, in range numbers beget in range numbers, and in range numbers make us want to check for more in range numbers more frequently. It’s undeniable that when we see numbers that don’t cause the response of rage, frustration, sadness, stress or anxiety, we are more inclined to check again. And again.

Technology that helps rather than hinders makes everyone feel better. Many think that it’s a given that new tech makes life easier, but unfortunately, that’s not always the truth, because often – at least to begin with – it requires more input from the user. Actually needing to do more, but not necessarily seeing results is not a recipe for remaining enthused!

Boring tasks are boring, so any way that we can eliminate them or reduce them helps. Making appointments to see our HCPs, finding time to visit a pathology centre for quarterly A1cs (and more) and keeping our diabetes supplies and meds current all take physical time as well as mental time. I have a pharmacist who is like my personal assistant when it comes to reminding me that it’s probably time to reorder insulin and NDSS products and prompts me when I need a new insulin prescription and I cannot tell you how much I love her. She sends me texts messages (totally unobtrusive) and I reply by text and then a day or two later pop in and she has everything ready for me. I can’t remember the last time I ran out of something, thanks to Mae!

But for me, if there was a silver bullet, it would be this: I am motivated because of today. Today, I have been able to do everything I have wanted to do and diabetes has not stopped me, even momentarily. And that makes me want to do it more.

I know that a large part of that is that I have the capacity, the will and the ability to do what I need to make this happen. I speak from a position of privilege, because I also know that the devices I am using – and am able to afford to use – certainly do help me with everything. They have helped to make my diabetes today doable, manageable, and as untroublesome as diabetes can be.

You can threaten me with what is going to happen in five, ten, twenty years’ time; you can tell me about all the disabling and debilitating complications that will happen if I don’t remain motivated and how they will impact on my life as a fifty, sixty and seventy year old.

But unless what you are saying is going to impact on me right here, right now, I can ignore it, and I can ignore the things that may help me reduce the risk of those things happening.

Perhaps that’s where public health messages about diabetes get it wrong. They tend to focus on longer term impacts. It’s not just teenagers who believe they are invincible. Despite a body that each and every day looks less like that of a sprightly youth, I think I am still young. I think all the things that are considered long-term issues are still years off. Being unmotivated doesn’t seem to matter when I don’t need to deal with those issues today.

But when diabetes does impact on my day now, then I notice. More hypos, more hypers, more interrupted sleep, more roller coaster numbers, more exhaustion, more feeling crappy. All of these things make day to day life more difficult. And I want to avoid them as much as I can.

I’m quite pleased with my solid 3.5. Sure, it could be better. Sure I could do more. But it’s consistent. And it’s achievable. Plus, quite frankly, everyone around me should be pleased with the absence of interpretive dance.

Click to get your own Casualty Girl bag.

I am old enough and smart enough to understand the way women are meant to respond to the lies of advertising. We are constantly told –  and meant to believe –  we are not enough. Our bodies are not slim enough, our skin is not taut enough, our thighs are not firm enough, our hair is not shiny enough, our arms are not toned enough.

At my current age, I’m meant to be trying to erase the signs of ageing, willing wrinkles away with an assortment of lotions, potions and minor (and major!) cosmetic surgery, plus trying somehow to regain the body I had twenty years ago.

Thanks to a mother who pointed out the deception of advertising from when I was a young girl, refusing to allow us to buy into the spin, plus a healthy dose of political and feminist teachers at school, all combined with much reading as a teen of Naomi Wolf, Susie Orbach, Gloria Steinem and Betty Friedan, and then later on, Kaz Cooke’s Real Gorgeous, I manage to not be too overcome with my body image issues and feelings of inadequacy. Mostly

My body is forty-four years old. I’m okay with looking in the mirror and seeing a reflection that reminds of me that.

I see the lines around my eyes and am not too startled because I know they have formed thanks to many years of laughing so hard that I can barely breathe, cried so hard because of loss that has rocked me to my core, walked for miles through cities while the sun has shone brightly (and I didn’t reapply my sunscreen).

I’m okay with my body not looking the way it did when I was twenty. I quite love the evidence that I carried and delivered a healthy baby – there is a lot of evidence of that! My far-less-than taut stomach points to that as much as the scar along my lower abdomen from where she escaped.

Surgery would be the only way to return to the pertness destroyed after twenty months of breastfeeding. But quite frankly, I’m kinda proud of the signs from that, because initially it was such a challenge for me to learn to breastfeed, and then manage the subsequent hypos. There should be some proof of the effort that all took!

I can deal with my skin not glowing as it did when I was younger, and the signs of a late night being far more visible than when I was in my early twenties. Those days I could manage being out until the early hours, and then be up bright and early for work the next day with nothing more than a coffee and a slick of my signature red lipstick to deal with the lack of sleep.

And the occasional grey hairs that appear around my hairline are met with acceptance – and gratitude that I can vainly still pluck them out because they are so intermittent that it’s easy to do.

I once wrote that ageing is a privilege. Not only do I believe that, but each and every additional year I live with diabetes, I believe it even more.

I just wish that while I acknowledge the miracle that is my life today – because had I been diagnosed with diabetes a mere seventy-seven years earlier, I would not be alive today – I could be more comfortable and accepting with how I wear diabetes on my body and in my mind.

It makes no sense that I am still uncomfortable of the visible signs of diabetes on my body. But that is how I react most days. The devices I wear still make me wince at their sight. I try to avoid looking at the scars and marks and signs of those devices on my body – all over my stomach and hips. I notice myself more aggressively washing those parts of my skin, and wonder if I am trying to scrub away the signs of diabetes.

In the mornings when I get dressed, I hide my pump and RileyLink away as fast as I can, tucking them into my bra and throwing on something over the top so they are not in my line of vision as I stand at the mirror applying my makeup. I’m not ever going to be one of those people who wears her pump on her hip, proudly showing it to anyone who asks.

And even though my Dexcom is on my upper arm, I prefer the cooler months when I can hide it away from sight under layers of Melbourne black.

Today, I spoke with a mother of a teenager who wanted to know how she could convince her daughter to agree to wearing her pump again. ‘She hates how it looks on her,’the mum said to me. ‘When will she get over it and just realise it’s the best way for her to manage her diabetes?’And I didn’t know what to say because I am a woman in my mid-forties and I am not ‘over it’, seventeen and a half years after first attaching an insulin pump to my body.

The only thing I could say was that it can be a difficult thing for some people to accept – and that I too struggle with it. But that the compromise for me is that as much as I hate seeing diabetes on my body, I’ve accepted that the devices make me feel and manage my diabetes better with them there. But understanding that takes time. Maybe age helps too.

My ageing body is something I can wear with pride because it tells the story of my life and what my body has managed to do. Whereas my diabetes body points to parts of me that are broken. And can’t be put back together, no matter how hard I try, or how hard I try to convince myself otherwise.

Have you seen Body Posi Betes? It’s the brainchild of my darling friend Georgie Peters who is doing everything she can to promote body positivity in the diabetes space. You can join the Body Posi Betes Facebook page here and follow the Insta feed here. I’m going to binge through all the posts again right now, because truthfully, I need a bit of diabetes body positivity right now.

Usually hidden from (my) sight.

Sometime last week, I marked a year since I started using Loop. Measure for measure my diabetes is a lot nicer to deal with these days and I know that I have settled into the comfort that comes with something that just seems to be working. The predictability of loop seems to fly in the face of all that is diabetes, so I do admit to not getting too comfortable with it all – even after fifty-two weeks of seemingly boring diabetes.

This was startlingly obvious to me when I reflect on my last two very busy weeks. As I ran around the Adelaide Convention Centre last week, not once did I think about Conference Hypo Syndrome. As I flew from Melbourne to Sydney to Adelaide and back home to Melbourne, I didn’t think, even for a moment, about travel lows and highs. And throughout the busy days, and the long busy nights of the two weeks – which involved hours sitting still in sessions and meetings as well as times of a lot more activity – apart from a cursory glance at my Loop app, diabetes didn’t bother me.)

It has been almost 12 months since I first spoke about Loop at a health professional conference, and it’s fair to say that I am still slightly traumatised by the memory of that session. I know that for the vast majority of the people in the room on that rainy day in Sydney, most had never even heard of the world of DIY diabetes, and the idea that a forty-something-year old woman with diabetes was standing before them talking about how I’d built my own pancreas was more than a little terrifying. And they let me know about it.

There was disbelief, horror and alarm that I was telling my story. I repeatedly heard people tell me that this was irresponsible and unsafe. And a number of HCPs were shocked, worried and appalled that the instructions for others to do what I had done were freely, easily and openly available online. (My cheeriness about open source wasn’t mirrored by most at ADATS.)

I’m pleased to say that wasn’t the response last week, during or following the DIYAPS symposium ‘The Brave New World of Diabetes Technology’, which featured me sharing about my own personal experience of why I decided to, and my first year of Loop; David Burren speaking about the technical aspects of the DIY technologies, and Cheryl Steele encouraging HCPs to support people using these technologies. The formal presentations were rounded out with Greg Johnson launching the Diabetes Australia DIY Technologies Position Statement.

It was standing room only, and great (and surprising) to see a number of endocrinologists in an ADEA symposium. We deliberately programmed the session to have a lot of time for questions, because we knew there would be lots! And there were.

There were a number of questions from the audience about what the role of HCPs is if someone comes to them and says they are, or they want to start, looping, and I think the consensus is that while we don’t necessarily need our HCPs to understand the intricacies of the specific technologies, and we are very clear that we don’t want, expect or need them to be able to help us build our loop, we need them to acknowledge that DIYAPS is a reality for more and more people with diabetes.

The overall feeling in throughout and following our symposium was of interest and curiosity. But even more, a desire to truly learn and understand more about the #WeAreNotWaiting world and where HCPs fit into it all, and how they can support those of us making the choice to loop.

The shift in the attitudes of health professionals is significant and important, and it extends far beyond DIY diabetes technologies. Because it all comes back to the whole idea of choice. There will never be only one right way for all people with diabetes. It doesn’t matter if we are talking about the foods we choose to eat, the technologies we choose to use, where we decide to see how HCPs, our decision to wait or not wait, or the support and services we choose to link in with. We need to have the space to do what is best for our diabetes. We need the freedom to make the choice. And we need our HCPs to support our decisions.

I have already shared this, but in case you missed it, the three presentations from our symposium can be watched here:

DISCLOSURES

My travel and accommodation to ADC was funded as part of my role at Diabetes Australia. Thanks to the ADS and ADEA for providing me with a media pass to attend the Congress. 

The day before the Australasian Diabetes Congress (ADC) started, Ascensia Diabetes Care brought together a number of Australian diabetes blogger and advocates for the Australian Diabetes Social Media Summit, #OzDSMS – an event that promised to tackle some interesting and difficult topics in diabetes. The social media component was relevant for a number of reasons: the #TalkAboutComplications initiative that The Grumpy Pumper would be speaking about had been (and continues to be) driven on social media; and we really wanted to share as much as we could from the day on different social media platforms to ensure that those not in the room had a clear picture of what was going on and were able to join the conversation.

This planning for the event happened after one of those brainstorming meetings of minds and chance that sometimes occur at diabetes conference. I caught up with Joe Delahunty, Global Head of Communications at Ascensia at ADA because he wanted to speak with me about the launch of their Contour Next One blood glucose meter into the Australian market. And from there, plans for the social media summit were hatched. Joe isn’t afraid to look outside the box when considering ways to work with PWD, and his idea of a blogger event tied in beautifully with the ADC which would already have a number of diabetes advocates in attendance. We both knew that we needed a drawcard speaker. So he sent us Grumps.

One thing was clear from the beginning of the event’s planning – we wanted this event to tackle some issues that aren’t always readily and keenly discussed at diabetes gatherings. It is often a frustration of mine when following along industry-funded advocate events that the topics can seem a little frivolous, and there is the risk that they can seem a little junket-like because most of what is being shared is selfies from the attendees in exotic locations. (For the record, I am always really proud of the Aussie DX events hosted by Abbott because the programs don’t appear as though we’ve been brought together to do nothing more than celebrate our lack of beta cell function while swanning around Australian capital cities.)

The #OzDSMS program was simple – three talks plus a product plug. The discussion was going to be led and directed by the PWD in the room, but the Ascensia team wanted to be part of that discussion, rather than just sitting and listening.

Grumps led the first session in a discussion about how the whole #TalkAboutComplications thing came about after being diagnosed with a foot ulcer. Although he had prepared a talk and slides, the conversation did keep heading off on very convoluted tangents as people shared their experiences and asked a lot of questions.

For the second session, Grumps and I drove a discussion  focused on decision making and choice when it comes to diabetes technologies, with a strong theme running through that while the people in the room may know (and perhaps even use) the latest and greatest in tech, most people using insulin are still using MDI and BG monitoring as their diabetes tech. (For some perspective: in Australia, there are 120,000 people with type 1 diabetes and about 300,000 insulin-requiring people with type 2 diabetes. Only about 23,000 people use insulin pumps as their insulin delivery method. And there would not be anywhere near that number using CGM.)

This certainly is interesting when we consider that most online discussions about diabetes technology are about the latest devices available. We tried to nut out how to make the discussion about the most commonly-used technologies relevant – and prominent too.

Also in this session was a conversation about back up plans. While this is one of Grumps’ pet topics (he wrote about it in one of his #WWGD posts here), I think he met his match in David Burren, our own Bionic Wookiee. Between the two of them, they have back up plans on top of back up plans on top of back up plans, and over the week came to the rescue of a number of us at ADC who clearly are not as paranoid well organised as them.

Yes, there was talk of product. Ascensia’s Contour Next One meter was being launched at ADC, so there were freebies for all and a short presentation about the meter. (For a super detailed review of the new meter and the app that accompanies it, here’s Bionic Wookiee’s take.)

It makes sense that device companies use these sorts of events as an opportunity to spruik product, especially if it’s a new product. I am not naïve enough to ever forget that we’re dealing with the big business of medical tech, shareholders, ROI and a bottom line. But as I have said before, I WANT us to be part of their marketing machine, because the alternative is that we’re not included in the discussion. I’ve not drunk the Kool Aid – I’m fully aware they know that we will have some reach if we write about their product. I’m also fully aware that even though our bias should always be considered, the words remain our own.

I was super pleased that during the small part of the day dedicated to talking about the device, the presentation wasn’t simply about trying to blind us with all the fancy bells and whistles included in the meter. Instead, the focus was on accuracy. As I wrote here, accuracy will always be king to me, because I am dosing a potentially lethal drug based on the numbers this little device shows me. (Well, these days, I need it for when I calibrate my CGM which will then inform Loop to dose that potentially lethal drug.) Accuracy matters. Always and it should be the first thing we are told about when it comes to any diabetes device.

We moved to the Adelaide Oval for dinner for a final presentation by CDE and fellow PWD, Cheryl Steele, who also spoke about accuracy and why it is critical (this went beyond just talking about the new meter). I walked away considering my lax attitude to CGM calibration…not that I’ve necessarily made any changes to that attitude yet.

It was an exhausting day, but a very satisfying one. There was a lot of chatter – both on- and offline and it felt that this was just the start of something. Ascensia has not run an event like this before and hopefully the lively discussions and engagement encourages them to see the merit in bringing together people with diabetes for frank and open dialogue about some not-so-easy topics. While this event was exclusively for adults with type 1 diabetes, I think people with type 2 diabetes, and other stakeholders such as parents of kids with diabetes, would benefit from coming together to share their particular experiences and thoughts in a similar event setting, and potentially some events which bring different groups together to hear others’ perspectives.

As ever, I felt that this event (and others like it) go a long way towards boosting opportunities between PWD and industry, and I am a firm believer that this is where we need to be positioned. Thanks to Ascensia for allowing that to happen; thanks to others from far and wide who joined in the conversation – we were listening. And mostly, thanks to all the advocates in the room for contributing so meaningfully.

Disclosures

I was involved in the planning for the Ascensia Diabetes Care Social Media Summit and attended and spoke at the events Grumps attended. I did not receive any payment from Ascensia for this involvement or for attending the Summit. They did provide lunch and dinner, and gave me a free Contour Next One blood glucose meter. And an almost endless supply of coffee. Ascensia has not asked me to write about any of the work I’ve done with them. But I will, because I like to share and I know there are people who are desperate to know what was going on while Grumps was here!

Grumps was here as a guest of Ascensia Diabetes Care, who brought him to Australia to be the keynote speaker at the Ascensia Australia Diabetes Social Media Summit and to speak at other events about his #TalkAboutComplications initiative.

My travel and accommodation to ADC was funded as part of my role at Diabetes Australia. I would like to thank the ADS and ADEA for providing me with a media pass to attend the Congress. 

Just over half way through the Australasian Diabetes Congress and after a massive few days, I’ve lost my voice, my way and, my ability to form coherent thoughts. Thank goodness for links and stuff.

Grumps Down Under

Before the Austalasian Diabetes Congress (ADC) even kicked off, our skies darkened, a final Winter cold-blast hit the east coast of Australia and The Grumpy Pumper arrived. Oh, and Melbourne lost our World’s Most Liveable City crown the day Grumps arrived in my hometown. I’m not necessarily saying these things are connected, but that’s a lot of coincidences…

Anyway, Grumps and I spent the next few days drinking Melbourne coffee and tackling the issue of language and diabetes, and Grumps spoke about his #TalkAboutComplications work. The ACBRD team has written about his visit last week here.

Coffee. Because: coffee.

Once Melbourne had enough of Grumps, we headed to  Sydney to do more work, including visiting the offices of Life for a Child and catching up with some of the team there.

#OZDSMS

After arriving in Adelaide, it was straight to the conference centre for the first gathering of Aussie diabetes advocates and bloggers for Ascensia Diabetes Care’s Social Media Summit.

Grumps was the special guest and as well as speaking about diabetes complications, he and I led a discussion about decision making in diabetes technology.

You can see what all the chatter was about by checking out the #OzDSMS tag on Twitter, (there was a lot of discussion!), and I’ll be writing more about it in coming days.

Hard at it!

DIYAPS at ADC

The next day, ADC kicked off with a symposium on the Brave New World of Diabetes Technology. Three early Aussie loopers – Cheryl Steele, David Burren and me – took to the stage and you can watch all our talks here:

New DIY Diabetes Technologies Position Statement at ADC

And if you make it all the way to the end (the symposium went for 2 hours all up), you’ll see Diabetes Australia CEO, Greg Johnson, launching Diabetes Australia’s new position statement about Do It Yourself Diabetes Technologies. I am so proud of this world first position statement, something that all diabetes stakeholders from all over the globe have been crying out for. (A reminder to anyone asking ‘Why don’t we have one of those?’: please don’t reinvent the rule. Adapt and use this for your jurisdiction and get it out there to start the conversation.

(Click link to go to position statement)

PWD on stage at ADC

Later in the day, the stage in Riverview 7, I was pleased to stand on a stage crowded with some wonderful diabetes advocates for an ADC first – a symposium on Co-design. More about this another time, but some familiar Aussie advocates shared their work which has really advanced the role of people with diabetes in the development and delivery of diabetes services, activities and resources. I was so pleased to be able to show the new Mytonomy ‘Changing the Conversation’ video as an excellent example of co-design.

Melinda Seed and Frank Sita at the co-design symposium

Sexy new pump hits Australia

And rounding out day one was the official launch of the Tandem t:slim pump which is making its way to our shores next month. This is a sexy, sexy little pump and I know there are going to be a lot of people very excited about it! (The pump is being distributed by AMSL Diabetes in Australia, so keep an eye on their website for more details.)

PWD at ADC

Pleasingly, there has been a presence of people with diabetes at ADC. Probably this is most visible when reading social media updates from the #DAPeoplesVoices. David Burren, Melinda Seed and Frank Sita have been invited by Diabetes Australia to provide updates and commentary of the Congress. They are tweeting machines and have been covering sessions, live-tweeting throughout. But that’s not all! Ashley Ng facilitated a Twitter workshop, encouraging HCPs at the event to get on Twitter and share what they were learning. Kim Henshaw is here from Diabetes Victoria; Tanya Ilkew from Diabetes Australia is also here. Grumps is here. And I’ve been doing what I can in between presenting and meetings.

I crashed last night with my voice gone, and fell asleep wrapped in the memory of a brilliant few days of impactful and meaningful advocacy efforts. There’s so much more to do. But these sorts of events, and opportunities to spend time with other people with diabetes who are certainly on the same wavelength and have the same commitment to bringing in the voice of PWD to all discussions, certainly help to advance our cause.

And one more thing

It looks like it’s that time again, Australia…

Disclosures

I was involved in the planning for the Ascensia Diabetes Care Social Media Summit and attended and spoke at the events Grumps attended. I did not receive any payment from Ascensia for this involvement or for attending the Summit. They did provide lunch and dinner, and gave me a free Contour Next One blood glucose meter. And an almost endless supply of coffee. Ascensia has not asked me to write about any of the work I’ve done with them. But I will, because I like to share and I know there are people who are desperate to know what was going on while Grumps was here!

Grumps was here as a guest of Ascensia Diabetes Care, who brought him to Australia to be the keynote speaker at the Ascensia Australia Diabetes Social Media Summit and to speak at other events about his #TalkAboutComplications initiative.

In yesterday’s MJA, there was an article about diabetes apps, written by two Australian endocrinologists, Dr Rahul Barmanray and Dr Esther Briganti. The article is a commentary of concerns of current apps in a highly unregulated system. (Read it here; or read the MJA Insight article here.)

There are currently over 1,500 diabetes apps available online. At the World Diabetes Congress back in 2015, Ellie Strock from Voluntis reported there were 800. The growth here is substantial and will only continue.

Most diabetes apps (in fact, most medical apps) are in no way regulated. In Australia, only a very small number have been through the TGA approval process. (Also at WDC in 2015, Ellie Strock said that of the 165,000 mHealth apps that were available at that time, only 103, or 0.06%, had FDA approval.)

I think that the writers are right: we need to be better at gathering and providing some decent evidence about the efficacy and safety of these apps (just as with any diabetes management tool). And it was great that they highlighted privacy issues: apps collect a lot of data (personal as well as medical), and some if this is shared with third parties. People with diabetes should be aware  of – and have a right to know – just how our data is being used.

However, I found the article to be sightly alarmist, and somewhat out of touch with aspects of day-to-day diabetes, and what PWD are looking for when it comes to digital solutions.

The realities of diabetes mean that every single day, we are making many, many choices and a lot of those are to do with dosing of insulin. We do this by combining the information we’ve been given by our HCPs, what we have come to learn about our own particular brand of diabetes, what we have learnt from our peers, and the technology we choose to employ to help us deliver that insulin. For me, that technology is a highly sophisticated app that provides me with bolus advice after I tell it how many carbs I’m about to eat. Once it has worked out its calculations (clever Loop!) I either agree and tell it to deliver, or override and put in my own number.

The article states:

‘Although apps increasingly advise on insulin doses, there is minimal published information on safety and efficacy, despite these apps effectively providing drug treatment recommendations without health care professional oversight.’

This sentence made me shake my head in disbelief. ‘Drug treatment without HCP oversight’ is my every day with diabetes. In fact, it’s reality for just about every person I know using insulin. Do HCPs really believe that they, and they alone provide oversight into our insulin doses?

There are a number of things we need to think about here. Firstly, as so often, we need to consider education. Apps should never be considered the ‘set and forget’ way to manage diabetes…but then, neither should any diabetes technology. Actually, neither should one-off diabetes education!

Our day one education when using insulin must start to provide an understanding of how it works, and that education must be refreshed and refreshed and REFRESHED. Even as someone in the ‘hand out all the diabetes technology at diagnosis’ camp, I know it is essential that people with diabetes understand insulin to carb ratios, insulin sensitivity factors and how to calculate our bolus insulin doses.

The thing is – we’re not getting that education a lot of the time. And if we don’t know we need it, we don’t know to ask for it. If we’re turning to apps to help us manage our diabetes, we probably do need some guidance about how to stay safe while using them, especially if PWD are diagnosed today when we expect there to be technology – such as apps – to make things more convenient.

Are the apps any less safe than what people are already doing with the limited education that is on offer for most people? I am astounded at the stories I hear of people diagnosed with diabetes being sent home with a syringe and a bottle of insulin and told to come back in a few days. I hear this repeatedly, so perhaps shouldn’t be too astounded.

We can’t blame the technology for not being accurate or smart enough if we haven’t been given the education to know that! Somewhere in there must be some HCP responsibility to educate PWD on what works and what doesn’t. And part of education these days must be about using technology, safely – with acknowledgment that technology is more than just a blood glucose meter, and does indeed include phone apps.

Apps exist because there is a gap in the market. That gap is that people are looking for ways to help make diabetes a little easier, whether that be prompting us to take our drugs at a certain time of the day, log and analyse our glucose levels, collecting and storing carb and other nutrient values for different foods, or helping us to calculate bolus doses.

We look to technology (including apps) to help us, and to work with and augment what we already know through the education we have received or have learnt from our HCPs – or at least, should have received.

While many of the apps claim that they will help lower A1c, I do wonder if that is the main reason that PWD decide to try a diabetes app. Is it that they are looking for improved diabetes management, or is it really just wanting some help in the constant tasks required to manage diabetes effectively?

As always, I look to my own experience as the only one I truly know and understand, and I can say with great confidence that I have never ever taken on any app with that intent. It’s always been about making things easier and reducing the burden of diabetes. Today, I rely on a highly unregulated app to do a lot of my day to day diabetes management. But because I have been fortunate to have the education I need, I am confident in doing that.

Apps are not evil or dangerous. TECHNOLOGY is not evil or dangerous. The real risks to people with diabetes is not having the right education to make informed, educated, confident decisions and choices about our diabetes; that same education that would help us assess the safety of the apps mentioned in the article.

Look, I am not saying that there shouldn’t be concerns about unregulated apps, or that we shouldn’t be having these conversations. Of course we bloody well should (and should have been for a long time; apps are not new).

But in there with the criticism and concern, there needs to be more acknowledgement of why people are turning to apps. Because otherwise, it looks like just another example of HCPs trying to stifle advancements in diabetes technology.

My highly unregulated app of choice, in a highly unregulated world of apps.

I have always loved shoes. I have a killer collection that ranges from perfectly comfortable and sensible flats, to impractical, not all that sensible – but damn gorgeous – heels. My boot collection is enviable – current faves are the animal print stacked heel ankle boot, and tan coloured knee highs that wouldn’t be out of place in an ABBA revival band. Shoes can be works of art – the elegant black suede pumps with stunning bright coloured embroidered flowers now sit on a bookshelf, too worn to wear anymore, but too beautiful to throw out.

I remember the shoes I was wearing at important times in my life – they mark significant moments, sending memories flooding back to me. My wedding shoes were white satin pumps, comfortable enough to walk in all day long and dance in all night long. They are decorated with beads from my mum’s wedding dress and are still one of the prettiest pairs of shoes I have owned.

I dread being told by the podiatrist on my not-frequent-enough visits that I need to start to think about wearing more sensible shoes all the time. But so far, that’s not happened. She tells me that I can continue to go about wearing what I have, as long as I remember to regularly check my feet and get anything unusual checked out as soon as I notice anything.

I get to keep walking in my shoes, and not worry that the heel could be lower or less stiletto-y, the base slightly wider and orthotic-friendly.

I frequently hear cries for others to ‘walk a mile in our shoes’ as a way for them to get an idea of what living with diabetes is all about. It often happens after a particularly lousy piece of journalism that just gets diabetes wrong, or when yet another comedian makes yet another lousy diabetes joke. These days, it happens a lot when politicians say ridiculous things about why they won’t fund diabetes products, services or programs.

I guess the idea is that if someone walks in our (diabetes) shoes, they’ll know what diabetes is like.

I have no interest in people walking a mile in my shoes (or boots, more likely at the moment in freezing cold and wet Melbourne) because really, how effective is this idea in getting people to truly know what diabetes is like? What will someone learn in that mile, especially with the knowledge that they can take off my diabetes shoes once they’ve walked that mile…something that those of us living with diabetes can’t do.

Just like puppies, diabetes shoes are for life…not just a mile.

It’s for this reason that I have always questioned the value of hypo simulators. (I wrote contributed to a piece for Diabetes Mine a few years ago after first seeing – and sitting in – a hypo simulator at the first EASD I attended, and pointed out how absurd they are in my talk at the HypoRESOLVE kick off meeting earlier this year.) Anyone using the simulator can get out at the end of the demonstration and they’re done. There isn’t the thought of another simulator hanging over their head forever, or doing whatever is possible to avoid them – which is what living with diabetes and the threat of hypoglycaemia is like. Or suddenly becoming immune to actually seeing a hypo simulator until they find themselves in one, like what happens with impaired hypo awareness.

And it’s why I’ve questioning exercises where people are asked to wear diabetes devices for a few days. (Such as the time I was highly critical of a doctor who, in a piece about wearing a pump for a few days, declared she understood the frustrations of living with diabetes.) I remember standing in a room of first year med students explaining diabetes and as part of the talk, they were asked to do a blood glucose check and inject saline into their stomachs to get an idea of what we go through. Some of them refused, so perhaps the value of that session was explaining to them that those of us required to do such tasks don’t have the privilege of choosing not to because we don’t like needles.

My criticism of these sorts of activities is not to make people feel bad. I’m simply attempting to bring some perspective to what they can actually achieve. Suggesting diabetes is about merely wearing devices (or wonky vision when hypo) is reducing it to a condition that can and should be easily managed, and is easy to live with.

I don’t want anyone to walk in my shoes. I can do that for myself. But I’m always happy to have people walking alongside me. There is always room for that. Especially if we’re going shoe shopping!

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