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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

On Monday morning, I was invited to an event at the Novo Nordisk facility in Malov to hear about the latest in diabetes and stem cell research. (Disclosures at the end of the post as always.) 

We heard from researchers from the site, as well as Sanjay Dutta from JDRF, and were given a tour of the labs to get a better understanding of the research process. Going into this event, I knew very little about stem cell research and its application in curing diabetes. (I should point out I still know very little…) Before I write more, I do want to highlight that the ethical sensitivity of stem cell research was addressed, although was not a focus of the event. It is undeniable that there are some people who refuse to accept stem cell research, or any treatments that come from it. I am not one of those people, but I was pleased to see the researchers acknowledging that this is an issue for many people around the world.

One of the speakers was Novo researcher Louise Winkel who gave a fantastic overview of stem cell research and how it applies to type 1 diabetes. If Louise was a senior school biology teacher, her students would all go on to study science at tertiary level. She made it interesting, understandable, and translated just what this very technical area of research could mean to those of us living with diabetes.

Jacob Sten Petersen shared how he has been working with Novo in diabetes research for 27 years. That’s a lot of time examining and investigating type 1 diabetes, trying to get a better understanding of just how diabetes works. Despite all the years of experience, and all the time spent with leading researchers and healthcare professionals, Jacob made a point of saying that it wasn’t until he actually met people with diabetes that he realised just how little he truly understood about life with diabetes.

That understanding increased exponentially when his young daughter was diagnosed with diabetes. You might think that having a child diagnosed with diabetes after you’ve given most of your career to researching it may make things a little easier. But listening to Jacob tell the story of his daughter’s diagnosis it was clear that the impact and devastation was no less at all.

As Jacob outlined the timeline of research, I was a little startled when he starting talking about this being the way forward to curing diabetes. I was even more startled at just how confidently, and almost casually, Jacob was talking about the cure. He was putting timeframes out there, saying that he firmly believed that no one in the room would die from, or because of, type 1 diabetes. I could tell that I wasn’t the only one surprised by this declaration.

Both Louise and Jacob were discussed the challenges of finding treatments, and ultimately a cure, for type 1 diabetes. Plus, there is the autoimmune response – you remember, the one that destroyed our beta cells in the first place – that needs to be addressed. Encapsulation will assist with that, but that also has challenges that need to be overcome. (It probably should not have come as a surprise when Louise told us the beta cells are the most difficult and sensitive cells, posing a number of trials, including how they stop secreting insulin the second oxygen concentration drops. Precious? You bet!)

However, despite the difficulties, Louise and Jacob were very clear about their goal and where their research was going: to cure type 1 diabetes.

I am very wary when it comes to talk of a diabetes cure. I don’t know one person with type 1 diabetes who has not heard some version of ‘The cure is just around the corner’. Sometimes that’s quantified with a timeframe. The old ‘five years’ chestnut is popular. At diagnosis, I was told five years; ten at the most. Well, here I am at twenty years and either I’ve not turned the right corner, or my first endocrinologist was being over-optimistic. I think it is probably the latter.

But I thought I’d made peace and accepted that that there would not be a cure in my lifetime, instead turning my hope – I have so much hope – towards better treatments, smarter devices, improved meds. I do not feel sadness or despair when I say I don’t believe I will be cured. I feel hopeful that thanks to ongoing research, my life will be less and less limited by diabetes.

Yet here I was, holding onto each word, and unlocking the part of my mind that I had, perhaps reluctantly, packed away many years ago. Would I allow myself to even think that a cure in my lifetime was a possibility?

The event concluded with a panel discussion, and as questions were invited, I raised my hand to ask how we balance talk about curing type 1 diabetes with managing expectations. Hope is important, but so is not being disappointed.

The discussion that followed was candid. I loved that the researchers could understand my apprehension – and that of a number of others in the room who also shared their reluctance to use the word cure. And that ‘cure’ meant different things to different people.

Because: what is a cure? I don’t think there is a simple answer to that. For some, it would be a fully functioning closed-loop automated insulin delivery device. But that would still involve an element of ‘user input’. Even if calibrations are not required, there will still be the need to change sensors, refill cartridges, change infusion sets.

For others, a fully implantable closed loop device which only needs ‘topping up’ with insulin occasionally would be considered a cure.

I know people who have had islet cell transplants, and pancreas transplants, but they require immunosuppression therapy and I don’t know that necessarily constitutes a cure.

Encapsulation may negate the need for immunosuppression, but would the cells need to be topped up…and how frequently would that need to happen? Would glucose checking still be required?

It is subjective and each person with diabetes would have different criteria they use to accept what is and what isn’t a cure. I don’t know what my criteria is yet.

I like the idea of not dying with – and certainly not dying from – type 1 diabetes. Do I think that is a reality? I don’t know. I feel that my adamant claim that there will not be a cure in my lifetime has been challenged this week and I’m okay with that. Because what hasn’t been challenged is the hope I have.

If in my lifetime with diabetes, the day to day tasks are reduced, the emotional burden is lessened, the fear and anxiety can be diminished, treatment of diabetes-related complications improves, then I feel that I am still somehow out in front. I may not be cured. But each step forward is a step in the right direction. Even if I don’t make it the finishing line and handed a cure.

DISCLOSURE

The DEEPtalk event was hosted by Novo Nordisk and was held at one of their facilities in Copenhagen. I was invited by the Global Patient Relations Team to moderate the event. Novo covered costs for my (premium economy) flights (I used my own frequent flyer miles to upgrade flights) and two nights’ accommodation as well as transfers and meals while I was in Copenhagen.

I was also invited to attend an information event where Novo employees spoke about current stem cell research in diabetes.

There is no expectation from the Global Patient Relations Team (or Novo Nordisk more broadly) that I will write about the event or other activities held while I was in Copenhagen and what I do write is mine. This summary of the stem cell event and presentations is all my own interpretation and has not been reviewed by Novo Nordisk prior to publication.

Research Wednesday is not a thing. Until now. And probably just for today. But there are a few things across my desk that need input from people with diabetes and diabetes healthcare professionals.

Today seemed like as good a day as any to share.

If you can, please do consider participating in any of these online surveys that are currently open. And also, share any of the surveys with others who you think can provide their experiences too.

One for the women with diabetes

A few months ago, I wrote a piece about the need to really speak about women’s sexual health and diabetes. It was a follow up post to something I wrote on the same topic a couple of years earlier.

These remain two of the most read posts on Diabetogenic. Both of them resulted in a lot of messages from a lot of women – most of whom I didn’t know – saying that for years they had searched for information about how diabetes can impact on their sexual health…and had found very little. They also said it was rarely, if ever, a topic their HCPs discussed or asked about. Conversations followed on online platforms too. Clearly – oh, so clearly – women with diabetes were searching not only for information about these issue, but to connect with other women would had similar experiences. The number of times I read the words ‘I thought I was the only one’ was somewhat heartbreaking.

(Side bar…and true story: after that piece was posted, this happened on a Sunday evening at the local Woolies:

Click for original tweet…and replies

Good to know that someone thought it was a good idea. Even if it meant that I shopped at a different store for a few weeks after that.)

That post coincided with some research Kath Barnard was conducting which has shown that sexual health issues affect three quarters of women with diabetes. The way that women are affected can be different – it may be physical, or emotional, or a combination of both.

Now, there is a follow up survey which is hoping to gather more details of exactly how diabetes impacts on sex in women with diabetes.

One for the men with diabetes

Because diabetes is an equal opportunity employer, there is also currently a survey for men with diabetes which is also looking at sexual health and relationships. While there may be quite a bit of information available about erectile dysfunction, sexual health in men is more than that.

Just as I’ve had conversations with women with diabetes about sex and diabetes, late night conference dinners and drinks often lead to a little more candid discussion about some of the issues around sex that men with diabetes experience too. And it seems that just as women are searching for more information, so are men.

Kath Barnard has stepped up again with a survey for men. This is a last call for this one as it is closing soon.

One for the new mums with diabetes

If you are a woman with type 1, type 2 or gestational diabetes who is pregnant, or has been pregnant in the last year, please consider completing this survey from the NHMRC Clinical Trials Centre at Sydney Medical School (from the University of Sydney).

The aim of this research is to better understand glucose monitoring experiences and preferences of pregnant women with diabetes.

The survey has been open for a few weeks now, and participation rates are not great, so if you are able to spare 20 minutes to provide your input, please do. And also share with relevant networks.

One for the HCPs

This survey is JUST sneaking in as it closes today!

The Diabetes and Schools consultation is continuing, and now, paediatric and adolescent healthcare professionals, and HCPs involved in diabetes education and training of school staff are being asked to complete a short survey.

This will form part of the overall consultation and will help to shape the new, nationally consistent training program being developed by Diabetes Australia, ADEA, ADS, JDRF (Aus) and APEG.

There really is no time to spare on this one. You only have until tonight.

 

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