Diabetes Musings

Undoubtedly the biggest issue that stuck out to me from the Australasian Diabetes Congress was the difficulty of managing diabetes among teenagers and young adults.

Continuous Glucose Monitoring has been fully subsidised for people under the age of 21 in Australia since April 2017. Yet in Friday’s tech symposium, one presentation in particular highlighted high drop out rates of CGM among youth. Of the 115 or so research participants who were using CGM at the commencement of the study, only 44 were still using the technology six months later. Underlying reasons hinted at the technology being a barrier to kids fitting in with their peers, particularly in social settings such as playing sports. Many also didn’t like the attachment to ‘another’ device.

It was also pretty evident in presentation after presentation that teens and early 20s were the age brackets where diabetes was the most difficult to manage. Researchers suggested that young adulthood was associated significant life changes and challenges such as university, work and moving out of home to name a few.

To be completely honest, I don’t like hearing the (repetitive) argument that the government should subsidise technology for everyone because it will keep people out of hospitals and save lives and reduce the economic impact of diabetes on the health system. I don’t have a doubt that technology has improved the quality of my life and my ability to manage my own diabetes more effectively. However if there’s one thing that was astoundingly clear from this presentation, it’s that there are a multitude of factors in play beyond the tech alone that are contributing towards diabetes outcomes.

Models of care would be a pretty big one. I’ve heard on good authority that a lot of people slip through the cracks in the transition from paediatric to adult care. Many of us adopt approaches toward managing diabetes that might not be ‘textbook,’ but they make sense to us based on countless hours of lived experience. We need a healthcare system that supports us in those decisions, and doesn’t scare us away. The impact of the attitudes and language used by our healthcare professionals cannot be underestimated. My first endocrinologist told me that I had very poor control over my diabetes mere weeks after my diagnosis. That can be detrimental to a young person who is already feeling insecure about a new lifelong condition.

Let’s get controversial here. Nutrition. I don’t for a second believe that diet is a one-size-fits-all, but the nutrition advice we are being given is both vague and conflicting. I believe that we are all to blame for this one. Healthcare professionals, the media, d-grade celebrities and even the diabetes community. I personally wish that instead of demonising foods and food groups, we focussed on real food. Fruit, veg and plant based foods. Some protein. Learning to prepare as many of our meals at home. And not demonising those treat foods that I truly do enjoy, if I am that way inclined.

Instead of being instructed to only eat low glycemic index foods, it would have been helpful to have received some basic training around the fundamentals of insulin. It took me years to realise that insulin can take 15 minutes to start working after an injection, and that in some instances it may be helpful to give insulin prior to eating. Carbohydrate counting wasn’t a firm part of my diabetes education, nor was I told that I might need some insulin to cover a dinner of pork chops. A good basal and bolus regimen is paramount to effective diabetes management, and Gary Scheiner’s Think Like a Pancreas should be essential reading for every person with diabetes.

The consumer voice session that I was a part of earlier in the week also flagged the importance of having psycho-social support in diabetes care, whether that be through a psychologist or peer support from loved ones and fellow people with diabetes. I know for me personally, it’s that psycho-social support that has helped me to wear my diabetes on my sleeve. Its given me the confidence to be able to manage my diabetes in any kind of situation with ease.

I’d also like to wrap this up by saying that these are my humble suggestions as to what would have been helpful to me after my diagnosis at the age of 17. I don’t for a second pretend to know what it’s like to navigate diabetes as a kid, in a school setting among friends, or to be a parent navigating these situations. No judgement to anyone in these age groups. You are all amazing at what you do.

No two people with diabetes are the same. If there’s one thing that this session highlighted to me, it’s the need for solutions that fit the needs of each and every individual.

Disclosures: Diabetes Australia covered my flights, registration, three nights accommodation and some meals to attend the Australasian Diabetes Congress in Sydney. I gave up my own time to attend and am sharing my own thoughts here, as always.

I spent a fair chunk of last night ploughing through some uni work. I finished up at around 9pm, brushed my teeth, put on my pyjamas and sat down to catch up on the last episode of Australian Survivor. My eyes kept wandering to the clock on the DVD player, which was edging closer to 9.30pm, while my brain kept reminding me of my early start in the morning and my desire to maintain this post holiday feeling of zen. At around the 10 minute mark, sleep won out over Survivor as I switched off and headed to bed.

I feel as though I’ve been chasing my tail for days when it comes to my blood sugar levels. Nothing awfully high, but still a feeling of not quite being able to curb those highs as effectively as usual. I had woken up at around 9.7 yesterday, and was unable to catch my tail for the majority of the day.

As I climbed into bed last night, I noticed that my Libre trend was slowly but surely creeping up again. Just to settle my paranoia, I pricked my finger, which registered at 10.4. I gave a 2 unit correction. Not feeling confident that this would be enough to bring me down, I also set a temporary basal rate of 120%. I so badly didn’t want a repeat of that morning.

I lay there in bed, but couldn’t will myself to go to sleep while my mind wandered indecisively over what I should do. It was in that moment, at about a quarter to ten on a Wednesday night, that I registered that my levels hadn’t been co-operating quite right since I returned home from Sydney on Friday.

It’s not the first time that I’ve thrown away travel insulin, convinced that it’s somehow spoiled in-between flights and hotel rooms and days out in the sun. But I always just thought it was pure paranoia.

I always carry my insulin with me when I fly. It normally sits in my satchel, which sits on the ground underneath the seat in front me during the five hour flight across the country. I had already replaced my cartridge a day earlier with a fresh one from my travel stash, with no noticeable difference.

So, I heaved myself out of bed, pulled a fresh cartridge of insulin out of the bar fridge, and begrudgingly replaced the cartridge on my pump, knowing that I wouldn’t be able to sleep while my mind was plagued with diabetes paranoia.

Today hasn’t been perfect, but my insulin is definitely working a lot better and those Libre lines aren’t slowly creeping upwards out of habit.

Diabetes. The sixth sense that I didn’t know I had.

It’s been a really challenging year. I still feel as though I have mountains to climb to get to where I want to be with my degree and my career. I have wondered whether diabetes would be one of the things that would have to give way this year. I’ve stared into the depths of my WordPress dashboard at many points over the course of this year, wondering if I have anything left of value to add.

Then I attend a diabetes event like Australasian Diabetes Congress, and I am reminded that my impact, as a person living with diabetes is always something that I underestimate. People like me might only have a very small presence at conferences like these, but I always underestimate our impact. I couldn’t agree more with Kim’s sentiments around advocating for the value of lived experience during Tuesday’s #OzDSMS summit.

When I first attended this conference in 2017, I expressed that it was a truly humbling experience. It was surreal to be surrounded by so many healthcare professionals (particularly diabetes educators) who knew of us from our online presences. Who had probably never heard such candid conversations from people with diabetes outside of a clinical setting, but still wanted to hear our insights and learn from us. Two years later, and those feelings haven’t changed.

It’s been interesting to watch industry and diabetes orgs habitually send people who are relatively new to their organisation along to events like these, where they can learn from people like us. I think that’s a great move, one which I do commend. It’s also been surprising to hear more than a few comments about my content being used to support internal policy work by various industry. While this is undoubtedly a public forum, there is a value on lived experience and somehow I don’t think many in the industry realise that.

When I first found the diabetes online community, watching others share their lives with diabetes so openly made living with diabetes feel normal for the first time in my life. I remember looking on in envy at some of the amazing things that were going on all over the world. In person peer support felt really far away. I felt like I would have to travel to the other side of the world to attend a diabetes meet up.

Yet here I am today, surrounded by such an amazing tribe of people with diabetes. People who are bright, people who are actively bringing about change in their own communities, and above all people who I can exchange a look at and know that they simply ‘get’ it.

At the end of Tuesday’s #OzDSMS summit, I expressed to a room filled with fellow people with diabetes what an absolute privilege it always it to sit among such a bright group of individuals and hear their perspectives.

My cup is truly full.

(I know, I talk about peer support far too much…)

Disclosures: Ascensia Diabetes Care provided hospitality during Tuesday’s #OzDSMS which included lunch, drinks and canapés. Diabetes Australia covered my flights, three nights accommodation, some meals and registration to attend the Australasian Diabetes Congress in Sydney. I gave up my own time to attend, and am sharing my own thoughts, as always.

Welcome to the third and final day of the Australasian Diabetes Congress, the joint annual scientific meeting of the Australian Diabetes Society and the Australian Diabetes Educators Association. I’m here as a part of Diabetes Australia’s ‘People’s Voice’ team of consumer reporters.

My morning started with a detour to the True Plus stand, home of some amazing chocolate flavoured (and non-chalky) glucose tablets. Special thank you to Renza, who offered to walk past and get me some more samples. What are friends for?

My day kicked off with a Clinical Symposium on Technology for the prevention and management of complications in diabetes. With eye screenings recommended every two years, the audience heard about the challenges of engaging people with diabetes in their eye care after such a long span of time had passed, and also challenges in encouraging people to return for monthly retinopathy treatments. We were shown some new advances in retinal imaging that were addressing cost, bulkiness and the need to bring the person with diabetes to the eye camera.

Of most interest was the concept of Artificial Intelligence, which was particularly useful in remote and rural communities. We were presented a case study that comprised of a portable, offline retinal screening device. This was then combined with an offline Artificial Intelligence system on a smartphone that helped non-eye specialists to effectively assess eye health.

After morning tea, the #DAPeoplesVoice team headed to a session on technology and type 1 diabetes in young people. Young adults aged 18-25 were a particularly challenging age group in terms of meeting their hba1c targets, due to significant life changes happening around these ages. There was one graph presented that mapped out a clear spike in hba1cs among people in their late teens and 20s. I also wondered if the models of care didn’t warrant a further review. I know that transition from youth to adult services is still a challenge, while many people also fall through the cracks due to a lack of person centred care.

Research was also presented into improvements on hba1c since the introduction of subsidised CGM in under 21s in April 2017. Without going into too much detail, I feel very much that it’s still too early to draw any conclusions. Another study compared insulin pump therapy to multiple daily injections. While insulin pump therapy did produce slightly better hba1c results, the margins were extremely slim.

The most interesting presentation was one on uptake of CGM. 115 survey participants between the ages of 15 and 21 were offered subsidised CGM, and were followed at the 3 month and 6 month mark. Only 44 patients were using CGM at the 3 month mark, while only 18 stuck with it by the 6 month mark. Reasons cited were discomfort, inconvenience, attachment, visibility and a lack of suitability with their lifestyle (such as playing sports). I think these issues are particularly pertinent to kids, who just want to be kids.

It was great to see Bodil from Ascensia Diabetes Care and Donnette (sorry if I’ve spelt that wrong!) from Diabetes Australia ducking in and out of sessions over the past three days and immersing themselves in the conference experience. After passing ships in the night, it was also great to catch up briefly with Bec and Amy from the Family Centre at the Airport.

It’s a big ask to invest so much of your time time in the world of diabetes. A friend of mine once expressed the importance of taking whatever opportunity you get to (for lack of a better word) advocate, and I couldn’t agree more. When I first came to this conference in 2017, I expressed how truly humbling it was to connect with so many people who were passionate about diabetes. Two years later, and those feelings haven’t changed.

After an amazing week spent in the company of so many tribe members, my cup is well and truly full. Thank you to everyone who made my #19ADC experience so special.

Disclosures: Diabetes Australia covered my flights, registration, some meals and three nights accommodation to attend the Australasian Diabetes Congress as part of their ‘People’s Voice’ initiative. I have given up my own time to attend, and am sharing my own thoughts here, as always.

Welcome to day 2 of the Australasian Diabetes Congress, the annual scientific meeting of the Australian Diabetes Educators Association and the Australian Diabetes Society. I’m lucky enough to be here as part of Diabetes Australia’s ‘People’s Voice’ team of consumer reporters.

Tech news first! It was great to catch up with Sylva and James from Ypsomed, who this morning announced some infusion sets with Luer Lock connectors. This opens up the Orbit range of infusion sets to people using other insulin pumps with Luer lock connections.

Leanne from AMSL Diabetes also had the chance to catch up with her favourite customer. Dexcom G6 and Basal IQ, the low glucose suspend update to the Tandem t:slim insulin pump, has not yet received regulatory approval. The hold up may have something to do with all CGM products on the market requiring reclassification from Class 2 to Class 3 from the powers that be (or something like that). Leanne wouldn’t speculate on a timeframe for approval, but in the meantime we have a new hashtag going, #BasalIQForFrank. Get behind it!

On my way to this morning’s session, I ran into superstar endocrinologist Kevin Lee after some back and forth interaction through the #OzDOC. He was exactly as I imagined online. Great to meet you, Kevin!

I sat in on the National Association of Diabetes Centres (NADC) symposium this morning and was glad for the opportunity to gain a better understanding of the work that they do.

The first part of the session dealt with findings from the Australian National Diabetes Audit. The audit has collected data from over 6,000 patients to date from diabetes service centres around Australia. Each centre then receives a custom report comparing their performance to other centres across the country. I felt the measures surveyed were comprehensive, and it was particularly pleasing to see measures such as quality of life and diabetes distress covered. The gaps identified among patients were unsurprising: difficulties around blood glucose monitoring, taking medication, physical activity and following a prescribed diet.

The second part of the session dealt with the type 2 diabetes ‘models of care’ toolkit. This project identified existing models of care that were providing improved care delivery, patient satisfaction and improved outcomes – exploring how these models could be applied to different geographical locations and more integrated diabetes care across providers. Well done, team NADC!

After morning tea I went into a session on diabetes and the gut microbiome, which seems to be the latest craze. In people with type 2 diabetes, delivery of prebiotics and probiotics had shown promising results. Things like improved fasting glucose, hba1c, triglycerides and other markers. However when Iranian research was removed from these findings, prebiotics and probiotics showed no benefit for type 2 diabetes.

The session touched on artificial sweeteners. My understanding was that because the composition of each person’s gut is different, some people absorb the sweeteners while others build up a defence to them. Which might explain the theory as to why some people are unaffected by artificial sweeteners, while other people (like me) spike. Lucky I prefer the real stuff!

This afternoon I was presenting at a ‘Consumer Voice’ symposium which looked at collaboration in diabetes care with three other panellists. It was great to hear fresh (to me) perspectives in optometrist Amira, and Diabetes Australia’s Chris who shared his personal experiences with type 2 diabetes in Aboriginal communities. In line with previous years, it is generally the diabetes educators who tend to come along to sessions like these and want to learn from lived experience. While it would have been nicer to see more healthcare professionals tag along, I do want to thank the Australian Diabetes Educators Association for providing us with this platform.

Disclosures: Diabetes Australia covered my travel, three nights accommodation, some meals and registration costs to attend the Australasian Diabetes Congress as part of their ‘People’s Voice’ initiative. I gave up my own time to attend the Congress and am sharing my own thoughts here, as always.