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Seventeen years ago, I had a decision to make. Would I enrol our soon-to-be-born baby in research that would tell us if she had any of the antibodies for type 1 diabetes?  

I thought about it long and hard. Aaron and I spoke about it a lot. He wanted to support me with whatever I thought would be best. In the end, we decided not to do it. Even before our daughter was born there was a dread that I could barely give word to – I was terrified that I would be responsible for passing on my diabetes to my baby. That feeling hasn’t gone, by the way. I have spent a lot of hours working through it with a psychologist to try to understand the source of the anxiety and learn to manage the fear in a way that doesn’t become all encompassing. Because there were times that I felt paralysed with that fear. I knew I needed to get through that. 

I felt horribly guilty about not signing her up straight away and registering her in research. When I returned to work after maternity leave, there was a trial that was in full recruitment mode, and I once again faced the decision. I was actively promoting this study through my work, and speaking to the researchers a lot. A couple of times, I asked if I could speak with them in a personal rather than professional capacity and explain my reticence to enrol my daughter, even though I could understand why the work was so important. I asked for their advice and guidance, and they were always so wonderfully kind and understanding when I said that I simply didn’t feel that I could proceed. I think that part of the reason was that there wasn’t really all that much that could be done if it was identified that she did indeed have one or more of the islet autoantibodies. 

Over the last couple of years, there has been a lot of interest and excitement in research into prevention and delay of type 1 diabetes. That ‘p’ word that has only ever been attached to type 2 diabetes now very firmly has a place when it comes to type 1 diabetes. At the ADC earlier this month, I listened to a couple of hours of talks from researchers who were talking all about screening for type 1 diabetes, and interventions that are taking place around the world with remarkable results. 

The Type 1 Screen program has been running in Australia since 2018. It is open to relatives of someone with type 1 diabetes, aged 2 – 30 years. After initial screening, people without antibodies are screened every five years; people with antibodies are screened annually. Up until now, screening has been by doing a pathology blood test. However, home collection is being developed and, at the time of the presentation, was about to be launched. Home collection will be done by using blood from a finger prick.

So, what are the benefits of screening for type 1 diabetes? Well, there are many!

Early diagnosis (of anything) is a good thing! In a perfect world, early diagnosis means early treatment which means better outcomes. It also helps people and families prepare for progression to diabetes. 

Screening reduces the risk of DKA at diagnosis. While that may make for a less traumatic diagnosis experience, there are also linger term benefits for this. DKA at diagnosis increases the risk of recurrent DKA, a higher A1c and increases the risk of diabetes-related complications. 

Prevention is on the horizon! Knowing people who are at risk of type 1 diabetes means employing interventions that have the potential to delay, and may one day prevent, type 1 diabetes. Research using the drug Teplizumab delayed the onset of type 1 diabetes by two years. 

Researchers and clinicians are talking about stages of type 1 diabetes and this is where it gets super interesting. Stage three type 1 diabetes I diagnosis and, typically, that’s where treatment starts. But in the future, it’s possible that treatment, including glucose monitoring, could be routine for stages one and two. 

I listened to all this carefully and one thing that was clear to me: even seventeen years later, the emotional impact of this is significant. Thankfully, Dr Christel Hendrieckxs from the ACBRD is part of the project team for this work here in Australia. It goes without saying that this is about a lot more than just early diagnosis of type 1 diabetes. There is also the impact on the family, especially if someone in that family already has type 1 diabetes. The mother guilt I have at the thought of passing on diabetes to my daughter is by no means a small thing. I know a number of other parents with diabetes who have similar thoughts. 

After that session, I asked my sixteen, almost seventeen, year old how she would feel about enrolling in Type 1 Screen. It’s completely up to her now – I am happy to chat about it, and tell her all about the program, but ultimately, it’s her decision. She understands why I was reluctant to enrol her when she was tiny, but now, I am giving her the option to get involved, and she needs to make her own decision which we’ll fully support. I don’t know what she will decide, but the seed has been planted, and I am here to chat with her about it, and organise times to meet with the researchers too if she’d like.

Watch my Q&A with A/Professor John Wentworth from Type 1 Screen about getting involved in this research.

More information about Type 1 Screen can be found here

Yesterday, the Australian vaccine rollout was expanded to include children. This follows the TGA approving the use of the Pfizer COVID-19 vaccine for children in the 12 – 15 year age group. ATAGI responded by including children with diabetes in that age group into Phase 1B, meaning they are eligible right now for a jab (provided, of course, they can find one…!).

Already I’m seeing in diabetes online discussions some parents of kids with type 1 diabetes saying their child will not be getting the vaccine, stating that the reason for that decision is because their type 1 diagnosis came shortly after one of their childhood vaccines.

And so it seems a good time to revisit this post that I wrote back in 2017. It has a very long title that could have been much more simply: correlation ≠ causation.

It is understandable to want to find a reason for a health issue. Being able to blame something means that we can, perhaps, stop blaming ourselves. I imagine that for parents kids with diabetes that desire to find something – anything – to point to would come as somewhat of a relief. But there is absolutely no evidence to suggest that vaccines are that reason.

Unfortunately, the idea that vaccines are the root of all evil and cause everything under the sun is a myth that is perpetuated over and over in antivax groups; groups where science, evidence and logic goes to die. Vaccines save lives and they are safe. Anyone who says otherwise is lying.

My sixteen year old is not in a priority group and cannot be vaccinated just yet, but she is ready to go as soon as her phase has the green light. All the adults nearest and dearest to her – her parents, grandparents, aunts and uncle, friends’ parents – are fully vaccinated now, and she knows what a privilege it is to be in that situation. She understands that with that privilege comes responsibility to do what you can to protect vulnerable cohorts in the community. And she also understands that vaccines are safe and they save lives.

If you are feeling unsure about getting a COVID vaccine – for you or your child – please speak with your GP. Don’t listen to someone in a Facebook group. And that may come as a surprise to anyone who knows how important I consider peer support and learning from others in our community, but to them I say this: I listen to and learn from people in the diabetes community because they don’t suggest anti-science approaches. They talk about support, and provide tips and tricks for living with diabetes. If anyone tells me to ignore doctors (because all they care about is getting rich), or to stop taking my insulin (because there is a natural supplement that will do the trick), I would block them as quickly as I could. Science works. Science is why people with diabetes are alive today. Science is why we have vaccines. Trust science. THAT’S what makes sense.

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In the next couple of weeks, our kid gets to line up for her next round of immunisations. At twelve years of age, that means that she can look forward to chickenpox and Diphtheria-Tetanus-Pertussis boosters, and a three-dose course of the HPV vaccine.

When the consent form was sent home, she begrudgingly pulled it out of her school bag and handed it to me. ‘I have to be immunised,’ she said employing the same facial expressions reserved for Brussels sprouts.

She took one look at me and then, slightly sheepishly, said, ‘I don’t get to complain about it, do I?’

Nope,’ I said to her. ‘You don’t get to complain about needles because…well because…suck it up princess. No sympathy about needles from your mean mamma! And you have to be vaccinated because that’s what we do. Immunisation is safe and is a really good way to stop the spread of infectious diseases that not too long ago people died from. And herd immunity only works if…

‘….if most people are immunised so diseases are not spread,’ she cut me off, finishing my sentence. I nodded at her proudly, signed the form and handed it back to her. ‘In your bag. Be grateful that you are being vaccinated. It’s a gift.’ (She mumbled something about it being a crappy gift, and that it would be better if she got a Readings gift voucher instead, but I ignored that.)

Over the weekend, the vaccination debate was fired up again with One Nationidiot leader, Pauline Hanson, sharing her half-brained thoughts on the issue.

I hate that I am even writing about Pauling Hanson. I despise what she stands for. Her unenlightened, racist, xenophobic, mean, ill-informed rhetoric, which is somehow interpreted as ‘she just says what many of us are thinking’, is disgusting. But her latest remarks go to show, once again, what an ignorant and dangerous fool she is.

Her comments coincided with a discussion on a type 1 diabetes Facebook page about vaccinations preceding T1D. Thankfully, smart people reminded anyone suggesting that their diabetes was a direct result of a recent vaccination that correlation does not equal causation.

I get really anxious when there is discussion about vaccinations, because the idea that this is something that can and should be debated is dangerous. There is no evidence to suggest that vaccines cause diabetes (or autism or anything else). There is, however, a lot of evidence to show that they do a shed-load of good. And if you don’t believe me, ask yourself how many cases of polio you’ve seen lately. People of my parents’ generation seemed to all know kids and adults with polio and talk about just how debilitating a condition it was. And they know first-hand of children who died of diseases such as measles or whooping cough.

This is not an ‘I have my opinion, you have yours. Let’s agree to disagree’ issue. It is, in fact, very black and white.

A number of people in the Facebook conversation commented that their (or their child’s) diagnosis coincided with a recent vaccination. But here’s the thing: type 1 diabetes doesn’t just happen. We know that it is a long and slow process.

Click for reference

What this shows is that even if onset of diabetes occurs at (correlates with) the time of a vaccination, it cannot possibly be the cause.

When we have people in the public sphere coming out and saying irresponsible things about vaccinations, it is damaging. People will listen to Pauline Hanson rather than listen to a doctor or a researcher with decades of experience, mountains of evidence and bucket-loads (technical term) of science to support their position.

The idea that ‘everyone should do their own research’ is flawed because there is far too much pseudo-science rubbish out there and sometimes it’s hard to work out what is a relevant and respectable source and what is gobbledygook (highly technical term).

Plus, those trying to refute the benefit of vaccinations employ the age-old tactic of conspiracy theories to have people who are not particularly well informed to start to question real experts. If you have ever heard anyone suggesting: government is in the pockets of Big Pharma / the aliens are controlling us / if we just ate well and danced in the sunshine / any other hare-brained suggestion, run – don’t walk – away from them. And don’t look back.

I have been thinking about this a lot in the last couple of days. I have what I describe as an irrational fear that my kid is going to develop diabetes. It keeps me awake at night, makes me burst into tears at time and scares me like nothing else. If I, for a second, thought for just a tiny second that vaccinating my daughter increased her chances of developing diabetes, she would be unvaccinated. If I thought there was any truth at all in the rubbish that vaccines cause diabetes, I wouldn’t have let her anywhere near a vaccination needle.

But there is no evidence to support that. None at all.

Today, there was an article in online publication, The Limbic, which reported on a recent study conducted out of Westmead Hospital Young Adult Diabetes Clinic

The top line news from this research was that there is a high discontinuation rate of CGM in young people (aged 15 to 21 years). 

Let me start by saying I know that CGM is not for everyone. I don’t believe everyone should use it, have to use or even necessarily be encouraged to use it. As with everything, your diabetes technology wishes and dreams may vary (#YDTWADMV really isn’t a catchy hashtag, is it?), and there is a lot to consider, including accessibility and affordability. In Australia, affordability is not such an issue for the age group that was studied in this research. Our NDSS CGM initiative means that access to CGM and Flash is fully taxpayer funded (with no out-of-pocket expenses) for pretty much all kids, adolescents and young people up to the age of 21, provided a healthcare professional fills in the relevant form. 

The top-level findings from this research are that within the first week of starting to use CGM, almost 60% of study participants stopped. The decision to start CGM was made after a one-hour education program that was offered to 151 young people with diabetes, and 44 of them decided to start CGM. Of those 44, 18 young people continued using it. They happened to be the 18 young people who were more connected with their HCP team (i.e., had more frequent clinic appointments) and had a lower A1c, which the researchers suggested meant that they were struggling less with their diabetes management. The 26 young people who chose not to continue cited reasons for stopping such as discomfort, and inconvenience.

I had a lot of questions after I read about this research. (These questions arose after reading the Limbic’s short article and the research abstract. I will follow up and read the whole article when I can get access.)

If the young people who chose to not continue were already struggling with their diabetes management, is adding a noisy, somewhat obvious (as in – it’s stuck to the body 24/7), data-heavy device necessarily a good idea? Was this discussed with them?

Was any psychological support offered to those young people having a tough time with their diabetes? 

Was it explained to the young people how to customise alarms to work for them? If diabetes management was already struggling and resulting in out-of-range numbers, high glucose alarms could have been turned off to begin with. Was this explained?

What education and support had been offered in the immediate period after they commenced CGM therapy? Was there follow up? Was there assistance with doing their first sensor change (which can be daunting for some)? 

In that one-hour education they were offered before deciding to start on a CGM, did they hear from others with diabetes – others their own age (i.e., their peers) – to have conversations about the pros and cons of this therapy, and learn tips and tricks for overcoming some typical concerns and frustrations?

What was in that one-hour education program? Apparently, 151 young people did the program. And only 44 people chose to start CGM. Now, as I’ve already said, I don’t think CGM is for everyone, but 29% seems like a pretty low uptake to me, especially considering there is no cost to use CGM. Did anyone ask if the education program was fit for purpose, or addressed all the issues that this cohort may have? Why did so few young people want to start CGM after doing the program?

Were they using the share function? Did they have the opportunity to turn that off if they felt insecure about others being able to see their glucose data every minute of every day?

What frustrates me so much about this sort of research and the way it is reported is that there is a narrative that the devices are problematic, and that the people who have stopped using them have somehow failed. 

CGM may not be for everyone, but it’s not problematic or terrible technology. I remember how long it took me to learn how to live with CGM and understand the value of it. It took me time and a lot of trial and error. I didn’t want to wear CGM, not because it was lousy tech, or because I was ‘failing’, but because I hadn’t been shown how to get it to work with and for me. I had to work that out myself – with the guidance of others with diabetes who explained that I could change the parameters for the alarms, or turn them off completely.

And these young people are YOUNG PEOPLE – with so much more going on, already struggling with their diabetes management, and not connected with their diabetes healthcare team as much as the young people who continued using CGM. Do we have any information about why they don’t want to connect with healthcare professionals? Could that be part of the reason that they didn’t want to continue using CGM?

I don’t think we should attribute blame in diabetes, but it happens all the time. And when it does, blame is usually targeted at the person with diabetes, but rarely the healthcare professional working in diabetes. If a person with diabetes is not provided adequate, relevant education and support for using a new piece of tech, there should not be any surprise if they make the decision to not keep going with it. 

The positives here is that there is data to show that young people who are already struggling with their diabetes management may need other things before slapping a CGM on them. Cool tech can only do so much; it’s the warm hands of understanding HCPs that might be needed first here. Someone to sit with them and understand what those struggles and challenges are, and find a way to work through them. And if CGM is decided as a way forward, work out a gently, gently approach rather than going from zero to every single bell and whistle switched on. 

I am a huge supporter and believer in research and I am involved in a number of research projects as an associate investigator or advisor. I’m an even bigger supporter in involving people with diabetes as part of research teams to remind other researchers of the real-life implications that could be considered as part of the study, offering a far richer research results. Growing an evidence base about diabetes technologies is how we get to put forward a strong case for funding and reimbursement, increased education programs and more research. But sometimes there seems to be a lot of gaps that need filling before we get a decent idea of what is going on because the findings only tell one very small chapter in the diabetes story.

An old Roz Chast cartoon from the New Yorker 1986. (Click for details)

Two years ago today, I was at Melbourne airport, getting ready to board a plane to get to Nijmegen, via Amsterdam, for the second AGM for the HypoRESOLVE project. I have been part of the Patient Advisory Committee (PAC) since the project’s start, and am honoured to be included amongst such a terrific and passionate group of people with type 1 and type 2 diabetes to lend the lived experience perspective to the work. (Disclosure statement at the end of today’s post.)

A project this big has a lot of moving parts and there is a constant stream of work being done. Right now, one of the most exciting things that we are seeing is a survey for people with diabetes to share their experiences of how hypos impact the quality of life of people with diabetes and our loved ones.

I love that this project is looking at more than simply the clinical side of hypoglycaemia. I’d like to think that the PAC has been influential in this, however one of the things that made me so keen to get involved in the project was that, from its inception, the psychological burden was an integral part of the research. Work package 6, led by Jane Speight and Frans Pouwer, aims to provide just what the impact of hypos are on the quality of life of PWD and our families. I know that in the presentations I’ve given for this project (including at the launch meeting in May 2018), my focus has certainly been on how hypos make me feel emotionally, rather than physically. (I’ll link to pieces I wrote about these presentations at the end of the post today.) 

Right now, it’s time for more than just the PWD on the PAC to have a say – to have Your SAY – by taking part in this new survey. It takes about 30 mins, although I’m seeing heaps of people saying they’re whizzing through it much quicker than that. To complete the survey, you need to:

  • be 16 years of over
  • be able to complete the survey in English
  • have type 1 diabetes, diagnosed over six months ago
  • have type 2 diabetes, and use insulin
  • live with and be in a relationship with someone with diabetes.

Click below to go to the survey, and to find out more information.

The more people who provide their experiences, the more rounded and richer the research will be. Throughout the project, the PAC has repeatedly advocated for the voices of as many PWD as possible to be included (this certainly isn’t the first time a group extending beyond PAC members has been consulted), so please, if you can, take the time to do the survey.

Hypos are a tricky beast; trying to get a really good picture about how they affect our quality of life is essential in developing treatments to make them more manageable. 

More about HypoRESOLVE?

Here’s the projects website.

This post, explaining all about the project’s launch meeting. 

This post about a talk I gave at a satellite meeting at EASD which addressed the differences between how PWD define hypos and the official categories. 

This post, about the difficulties of defining hypoglycaemia in ways that are meaningful for everyone.

Here’s a little video that we recorded at the kick-off meeting. 

And stay tuned for the podcast!

DISCLOSURE

I have been a member of the HypoRESOLVE PAC since the project started. Until the beginning of this year, PAC members were volunteers on the project, with all flights, accommodation, meals and expenses covered from the project budget. Since the beginning of 2021, PAC members have been paid an honorarium for time worked on the project. I have not been paid to write this post, and my words here have not been approved (or read) by anyone on the project before publication. 

The OPEN Diabetes Project is currently running a survey to look at the impact of do-it-yourself artificial pancreas systems (DIYAPS) on the health and wellbeing of users. There are stories all over the DOC about how people with diabetes (and parents of kids with diabetes) have taken the leap to Loop. These stories provide wonderful anecdotal tales of just why and how this tech has helped people.

The idea behind this new survey from the OPEN Diabetes team is to continue to build evidence about the effectiveness of this technology as well as take a look into the future to see just what this tech could have in store.

And important part of this new study is that it is not only OPEN (see what I did there?) to people who are using DIYAPS. That means anyone with diabetes can participate.

This project is important on a number of levels. It was conceived by people with diabetes and a significant number of the people involved in the project team (and I am one of them) are living with diabetes. We very much live the day-to-day life of diabetes and that certainly does make a difference when thinking about research. Also critically important is the fact that the ACBRD has recently joined the OPEN Project consortium. Having a team of researchers exclusively looking at the behavioural impact of diabetes technology will offer insights that have not necessarily been previously considered in such a robust way.

All the information you need can be found by clicking on the image below – including who to speak with if you are looking for more information. Please share the link to the survey with any of your diabetes networks, healthcare professionals who can help pass on details and anyone else who may be able to help spread the word.

A reminder – this is open to everyone with diabetes – not just people using DIYAPS. (I’m stating that again because it may not be all that clear as you are reading through the material once you click through to the survey.) You do not need to be Looping or ever tried the technology. Anyone with any type of diabetes, or parents/carers of kids with diabetes can be involved.

Click on link to take survey

DISCLSOURE

I am part of the Open Diabetes Project Team.

Over the weekend, an embargoed press release arrived in my inbox with a few different pieces of research that would be presented in coming days at EASD.

Being registered as press for diabetes conferences means getting an advance peek into some of the big stories that are likely to generate a lot of interest and discussion. This email offered three or four pieces of research, but it was the first one listed in the subject heading that made me catch my breath and hesitate on the button to read the email beyond the header,

Shorter. Life. Expectancy.

The three words ran through my mind over and over before I steeled myself enough to open the email and read the release, then the abstract and finally the full article. As confronting as the email header was, there was nothing in there that I didn’t expect, and nothing really that surprised me. It’s not new news. I remember being told early into my diagnosis that I could expect to live 15 years less because of diabetes; something I casually announced to my sister one night when we were out for dinner. Through tears, she made me promise to never say that again, and I just hope she’s not reading this right now.

But even though there was nothing in there that made me feel especially concerned, I did bristle at the conclusion of the article, in particular this:

‘Linking poor glycaemic control to expected mortality … may incentivise … people with diabetes and poor control to increase their efforts to achieve targets.’

I’m ignoring the language here, because even more problematic than the specific words in here is the sentiment which I read as ‘scare people and threaten them with early death to try harder’. Unsurprisingly, I find that horrendous. Equally horrendous is the assumption that people are not already trying as hard as they possibly can. It’s not possible to increase efforts if someone is already putting in the maximum.

Over the last twenty-two years, my diabetes management has sat at pretty much every single data point along the ‘glycaemic control’ spectrum, from A1Cs in the 4s and 5s all the way up to the mid-teens. There is no way that being told that I was going to die earlier would have made me pull up my socks to do better. In fact, it’s likely that if anyone had, at any point (but especially when I was sitting way above target), told me that I was sending myself to an early grave, all that would have done was send me further into the depressive burnout hole I was already cowering in.

It’s tough going knowing that the health condition that I’m doing everything in my power to manage as best as I possibly can is going to contribute to cutting my life short; that despite those efforts, I am likely to see fewer years of my daughter’s life and be outlived by most of my friends. Placing any of the blame for that on me for that makes me feel even worse.

I’m not here to argue with the article – it was an analysis of an audit of data out of England. I’m not here to say that this sort of information shouldn’t be shared, because of course it should be. Understanding outcomes, what drives them, interventions that can help and any other factor that provides better results for people with diabetes is a brilliant thing. These sorts of results could be used to highlight when and how to intensify and prioritise treatment options.

I do, however, question the way that the information will be used. Also, from the article:

‘Communication of life years lost from now to patients at the time of consultation with healthcare professionals and through messages publicised by advocacy groups … and … national/international patient facing organisations will be of great help in terms of disseminations of the conclusions of this study.’

I would be really dismayed if I saw any diabetes organisation using this information in a comms campaign, as I fear it could add concern and trauma to people living with diabetes. I worry about how it could be interpreted by well-meaning loved ones to say, ‘If you don’t start looking after yourself, you’re going to die,’ or something similar.

For the record, one of the other studies highlighted in the email was about hot baths and diabetes. The lowdown on that is having regular hot baths may improve cardiovascular risk factors in people with type 2 diabetes. I’m going to do an n=1 study to see if that also helps people with diabetes.

This was one of the first things I saw when I opened my email this morning: the lead article in the latest edition of The Limbic – Subsidised CGM has not improved outcomes in Australian children with T1D’.

I’m relying on the The Limbic’s commentary as the study is not open access (I have requested a copy from one of the authors), and according to the report, the focus of the study was improvements in A1C and reductions in severe hypoglycaemia.

It will come as no surprise to anyone who has read anything I have written about technology or heard me give one of my many, many talks on user experience that I found this report problematic. Screaming that a well-funded and hard-fought for program, providing much needed diabetes technology to children (and adults) is ‘underwhelming’ does not sit well with me at all, especially when the main way the program’s success has been evaluated is a highly flawed clinical measurement.

When I look at the benefits I list when it comes to using any sort of diabetes tech – or other diabetes management, whether that be a drug, an education program or even peer support – changes to my A1C is far down on the list. I understand that for some people, this is certainly a measure of success, but it is not even close to one of the first things I would consider.

My history of using diabetes technology is long and elaborate. Perhaps one of the best examples of just why A1C gives a very incomplete picture of how I measure success is my initial foray into using an insulin pump. It was almost 20 years ago, and I was only three years into living with diabetes. That story is one that could be used as an example of ‘How NOT to do pump therapy’.

I was educated (and I use that term very loosely) by a rep from the pump company. She talked at me for three hours, pressed buttons, loaded some numbers into the device and then stepped out so a dietitian could teach me all I needed to know about carb counting. She was in the room for forty-five minutes. (For context, this was my introduction to carb counting, because my first dietitian encounters were only about low GI, with a general direction of ‘Eat as much as you want of it as long as it is low GI’).

I was released from the hospital with this new device strapped to me, step by step instructions for how to do a cannula change in three days’ time, and absolutely no idea what I was doing.

But here’s what happened: I could sleep in again. I didn’t need to eat unless I really wanted to; eating by the clock became a thing of the past! I could eat brunch out with friends again, without having already had breakfast at 7am. I ate more of the foods I wanted to and stopped stressing out each time I sat down for a meal. I felt more relaxed. My life felt just a little bit more mine, rather than dictated to my a most unwelcome health condition. And sleep! Did I mention sleeping in?

My A1C was the highest it ever was. By all clinical measures, I was absolutely messing this up. But by my measures – which were based on how I was feeling, how emotionally robust I was, how burnt out I felt, how late I could sleep in on the weekend (I see a theme) – I was ticking every single box.

My endocrinologist told me that I was wasting my money (and his time) being on a pump, and nothing I could do to explain that for the first time in three years I felt like myself. Sure, I knew that I had work to do on my A1C, but I finally felt emotionally resilient enough to do that. He just shook his head and sent me on my way…and was promptly sacked.

(Luckily for me, the story ends well because about eight months later, I came across a woman called Cheryl Steele. Suddenly I could use a pump properly. My A1C came down; my quality of life remained elevated.)

My story is not uncommon. I have spoken with dozens and dozens of people who have benefited from the CGM initiate and overwhelmingly, the stories I hear are people who are grateful for the tech for what it has offered them. Interestingly, we rarely talk about those measures that HCPs and researchers seem to think are the best way to gauge the success of any sort of intervention. They talk about those same things I mentioned earlier. When the CGM initiative was first launched, parents of kids with diabetes told me they had slept for more than three hours at a time at night for the first time in years. They told me how they stopped fearing hypoglycaemia so much, because they were being alerted if their kids glucose levels were trending downwards. They told me that their kids were having sleepovers and heading off to school camp for the first time.

A1C? Maybe we would mention that somewhere down the track, but that wasn’t what got us the most excited. That wasn’t the bit we spoke about when we uttered the words ‘life changing’.

Obviously, research is important. Data is essential. It was data that provided the strong case for Diabetes Australia, JDRF, ADS, ADEA and APEG to advocate for CGM funding as part of the NDSS. But the case that was put forward also included research that looked at QoL, because the organisations know that this matters.

Research that focuses on A1C is always going to be problematic in a health condition that will never only be about that number. It’s problematic for a number of reasons – not just because it gets my shackles up before I’ve had my morning coffee. We know the pot of money that goes to supporting and funding initiatives, such as the one in this study, is very limited. Funding authorities don’t have the nuanced understanding of all the different interventions that need funding, so if a study like this comes across their desk, it could raise red flags.

I am not for a moment saying that this sort of research should not be conducted or that negative results should be buried. What I am saying is that any results need to be flagged as only ever presenting part of the issue as a whole.

I am looking forward to reading the whole study – and truly, I’m hoping that this blustering post is all a waste of time because somewhere in there, I will get to see that the researchers spent a fair bit of effort evaluation QoL as well. I’m hoping that the trumpeting heading from The Limbic is nothing more than their typical sensationalism.

My fear, however, is that there won’t be more, and that once again, PWD will have been reduced to nothing more than a flawed metric that shows only one corner of the picture of our lives with diabetes.

I’ll finish with one final thought. I advocate for PWD’s involvement in every single step of diabetes research (not just as participants of studies), and one of the reasons I do that is because when we are at the table when studies are being first mapped out, we are given the chance to remind those conducting the work that the answers they are seeking are coming from people. Real people who will always be far more than their diabetes. And somehow, that needs to be reflected in the study they are doing. It can be done. Unfortunately, this seems to have missed the mark.

I’ve written a few times about my thoughts on the role of psychologists in diabetes care. You can read about it here, and here. Or TL/DR: I believe that every person with diabetes should have access to a psychologist as part of all diabetes multidisciplinary care. Of course, not everyone will want to see a psychologist – and of course, that’s fine – but if they do, it should be easy, accessible and affordable to do so.

Right now, if you are an Australian adult living with diabetes, your input is needed into the development of a new information resource that will provide information on why, when and how to access a psychologist to support people with diabetes. You don’t need to have seen a psychologist before to participate. The resource will be produced by the NDSS, and the survey is being conducted by the ACBRD.

It won’t take you long, and if you participate, you will be reimbursed for your time. You can access all the details, including who to contact if you would like more information, by clicking on the image below.

Click here to participate!

Diabetes is always going to be about the mind as much as it is about the body, and that means we need to be supported by health professionals who understand that. Help to shape the information that might just get people starting to understand just how much #DiabetesPsychologyMatters.

Busan is a very different city today than it was last week. There won’t be warmly dressed people hurrying into BEXCO with IDF2019 lanyards around their necks, eager to learn about diabetes. The word ‘diabetes’ won’t be uttered in almost every language of the globe. There won’t be Melbourne diabetes people loudly lamenting that Starbucks seems to be the coffee of choice in the city.

And you won’t see groups of people from all around the world standing together talking about what it’s like to live with diabetes. Most of us have gone home to our respective corners of the world, back to our families, back to our jobs, back to our real lives. But we will always have Busan and the incredible week of the IDF Congress.

By the time I arrived in Busan on Monday, the IDF was already a different beast. There was a new President and Board in place and some of the concerns that we’d had about the handover had melted away to nothing. This paved the way for what we really there for: a week of learning, networking, hearing different perspectives and truly uniting for diabetes.

We did that.

Was it a perfect conference? Of course not; they never are. There were hiccoughs and AV fun. There were controversies that played out online very differently to the way they actually happened in real life. There were sessions – critically important and brilliant sessions from all streams– with disappointing turnouts.

But these are all minor concerns that are the reality of every conference I have ever attended. There will be a time for post-mortems and evaluations and planning for improvements to future conferences. That time, however, is not now. Now is the time to celebrate.

IDF 2019 was a brilliant showcase of diabetes from around the globe. As expected, I only attended sessions from the Living with Diabetes stream and every single story was beautifully presented, and enhanced by the professional expertise of the HCPs who shared the stage. Amongst the incredible tales were moments of discomfort. It’s challenging to hear of the struggles many of my sisters and brothers with diabetes face in their day to day lives. I was forced to confront my privilege in a way that demands more than just acknowledging it there.

Also, difficult to accept is realising that sometimes the chasm between what people living with diabetes want and need and what HCPs and researchers think we want is gulf-like. For every HCP who ‘gets us’ and understands the value of lived experience in the healthcare space dialogue, there are many others who just don’t accept it, and, despairingly, don’t want to listen.

But more on that another day. Because for now, I’m focused on the people who did such a stellar job. So here are just some of them!

Two hours after touching down in Busan, and we kicked off the sixth Ascensia Social Media Summit with these gems.

Bright and early on day 1 of IDF2019, and the auditorium was packed to hear about diabetes and tech.

Always, ALWAYS, pleased to share the stage with Jane. Here we are just before the panel session.

Georgie excited to TALK ABOUT HYPOS! (We couldn’t understand why there was an explanation mark at the end of that sentence.)

Manny Hernandez gave the LWD Stream Award Lecture and there is no one more qualified to talk about the importance of diabetes community. How honoured I was to introduce him!

Celebrating Manny! (Photo courtesy of Boudewijn Bertsch)

From Melbourne to Busan. Neighbours at IDF2019. Jo was speaking about living with a rare type of diabetes and Andy was there for support (and photos from rooftops).

This woman! Sana, deputy lead of the LWD Stream and a bright, fierce force.

Anita eloquently explaining the challenges of living with diabetes-related complications in Indonesia.

Apoorva highlighting #LanguageMatters in her talk.

Some of the most dynamic young people I have ever met at the Young Leaders in Diabetes Training Summit.

Cherise can always be relied upon to ask thoughtful questions.

I’ve lost count of the cities we’ve done our #DiabetesOnTour this year, but these blokes have made all my travel so much better! Thanks Bastian and Grumps.

My favourite people at IDF2019? The two baristas running this uber-hipster coffee van.

We were all surprised to see the room packed full at 8.30am on the last day of the Congress. Sex sells. Or people just want to talk about it…

One of the best pieces of advice I was ever give was this: surround yourself with smart women. This is the LWD stream from IDF2019. I truly was surrounded by the smartest of women! Thank you Sana, Pei Yan and Elizabeth. 

The final session in the LWD and my highlight of the whole congress was my neighbour, Sol, talking about living with MODY 3. We could not have scripted a closing remark better than his: ‘Being at this conference has made me feel part of something and with people that understand.’ Welcome to the world of diabetes peer support, Sol. You are so, so very welcome here.

 

DISCLOSURE

I was the Chair of the Living with Diabetes Stream at the IDF Congress in Busan. My flights to Busan were covered by Ascensia Global (in order for me to get to Busan in time to co-facilitate their Social Media Summit). Flights home and accommodation were covered by the IDF.

 

It’s Research Wednesday again. Still not a thing, although Jane Speight from the @ACBRD disagreed with me after I said that last time, so maybe it is a thing?

Anyway, here are a few research studies you may be interested in getting involved in. Remember, participating in research is a great way to help contribute to and shape diabetes care, as well as provide insights that only those of us living with (or around) diabetes truly can. Please do consider getting involved if you can.

Women Loopers in Australia – we need you!

The Australian Centre for Behavioural Research in Diabetes is currently recruiting women for a research project on DIYAPS.

This one has been open for a while and for some reason lots of blokes have participated, but we need some women to get involved. Women are a truly significant part of the DIY world. I know that when I want information about DIYAPS, the first person I look to is Dana Lewis. And for Loop specific info, Katie DiSimone. I also know that there are a lot of women loopers in Australia. And we need you!

So – if you are female, living in Australia, aged 18 years or over, have had type 1 diabetes for at least a year, and using Loop, OpenAPS or AndroidAPS , please consider getting involved. This study involves a phone interview which will take 45 to 60 minutes, and you’ll be asked about your looping views and experiences.

CLICK HERE TO CONTACT THE PROJECT MANAGER FOR FURTHER INFORMATION

(Disclosure: I’m involved in this study.)

Loopers everywhere – we need you!

The OPEN project is a collaboration of international patient innovators, clinicians, social and computer scientists and advocacy organisation investigating DIYAPS. The first piece of work from this consortium is called DIWHY (get it?) which is looking to provide a better understanding of the reasons that people with diabetes decide to take the DIYAPS road, as well as examine barriers and motivators to building and using these systems.

You can participate in DIWHY by taking the online survey which is open to adults with diabetes as well as parents/carers of children with diabetes. The survey is available in English and German.

CLICK HERE TO FIND OUT MORE AND DO THE SURVEY

(Disclosure: I’m involved in this one too…)

Social media and diabetes care

Jacqueline, from the University of Hamburg, is currently looking for people to complete an online survey to help with her Masters thesis. She is looking at the importance and use of social media in diabetes.

The survey is anonymous and will take you about ten minutes to complete.

CLICK HERE TO TAKE THE SURVEY

Still open – new mums with diabetes

Women with type 1, type 2 or gestational diabetes who are either pregnant or have been pregnant in the last year are still needed for a survey from the NHMRC Clinical Trials Centre at Sydney Medical School (from the University of Sydney).

This is a twenty minute survey and the aim of the research is to better understand the glucose monitoring preferences and experiences of women with diabetes during (or planning for) pregnancy.

CLICK HERE TO TAKE THE SURVEY

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