I frequently say that these days, I do hardly anything when it comes to diabetes. I credit the technology behind LOOP for making the last four-and-a-half years of diabetes a lot less labour intensive and emotionally draining than the nineteen-and-a-half years that came before. 

It’s true. Justin Walker’s assessment that his DIYAPS has given him back an hour a day rings true. (He said that in a presentation at Diabetes Mine’s DData back in 2018.)

The risk that comes with speaking about the benefits of amazing newer tech or drugs is that we, unintentionally, start to minimise what we still must do. I think in our eagerness to talk about how much better things are – and they often are markedly better – we lose the thread of the work we still put in. But our personal stories are just that, and we should speak about our experiences and the direct effect tech has in a way that feels authentic and true to us.

And that’s why accuracy in reporting beyond those personal accounts is important. Critical even. 

Yesterday, the inimitable Jacq Allen (if you are not following her on Twitter, please start now), tweeted a fabulous thread about the importance of getting terminology right when reporting diabetes tech. 

She was referring to a tweet sharing a BBC news article which repeatedly labelled a hybrid-closed loop system as an ‘artificial pancreas’. Jacq eloquently pointed out that the label was incorrect, and that even with this technology, the wearer still is required to put in a significant amount of work. She said: ‘…Calling it an ‘artificial pancreas’ makes it sound like a cure, like a plug and play, it makes diabetes sound easy, and while this makes diabetes less dangerous for me, adopting a term that makes it sound like it can magically emulate a WHOLE ORGAN is disingenuous and minimises the amount of time and effort it still takes to keep yourself well and safe.’ 

Jacq’s right. And after reading her thread, I started to think about the time and effort I had dedicated to diabetes over the previous week. 

This weekend, I spent time dealing with all the different components of Loop. For some reason my Dexcom was being a shit and all of a sudden decided to throw out the ‘signal loss’ alert. After doing all the trouble shooting things, I ended up deleting the app and reinstalling it, which necessitated having to pair the transmitter with the app. This happened twice. I also decided it would be a good time to recharge my Fenix (Dexcom G5 transmitter) and reset it. 

I ran out of insulin while at a family lunch, necessitating some pretty nifty calculations about how much IOB was floating around, and what that meant in terms of what I could eat from the table laden with an incredible spread of Italian food. 

Saturday night, Aaron surprised me with tickets to the Melbourne Theatre Company and in our usual shambolic fashion, we were running late, which meant a little jog (don’t laugh) from the car park to the theatre. I was in high-heeled boots and a skirt that scraped the ground. The degree of difficulty WITHOUT diabetes was high. As I less-than-daintily plunked myself in my seat, I looked at my CGM trace, trying to decide if the 5.5mmol/l with a straight arrow was perfect or perilous, and did a bit of advanced calculus to work out if the audience would be serenaded by the Dexcom alarm at some point in during the 90-minute performance. I snuck in a couple of fruit pastilles under my mask, and surreptitiously glanced down at my watch every ten minutes or so to see if further action was needed. It was. Because that straight arrow turned into double arrows up towards the end of the play.

I spent two hours out of my day off last week for a HCP appointment, as well as several hours dispersed throughout the week trying to work out if there would be any way at all that I might be able to access a fourth COVID boosted prior to flying to Barcelona at the end of the month. 

And that doesn’t include the time spent on daily calibrations required because I’m still using up G5 sensors, the pump lines that need replacing every three days (and checked on other days), reservoirs that need refilling (when I remember…) and batteries that need replacing. Or the time set allocated to daily games of ‘Where is my Orange Link’. And the brain power needed to guess calculate carbs in whatever I am eating. (And you bet there are clever people who no longer need to ‘announce’ carbs on the systems they’re using, but the other tasks still have to happen.) It doesn’t include the time out I had to take for a couple of so-called mild hypos that still necessitated time and effort to manage. 

Short of a cure, the holy grail for me in diabetes is each and every incremental step we take that means diabetes intrudes less in my life. I will acknowledge with gratitude and amazement and relief at how much less disturbance and interruption there is today, thanks to LOOP, but it would be misleading for me to say that diabetes doesn’t still interfere and take time. 

Plus, I’ve not even started to mention the emotional labour involved in living with diabetes. It is constant, it is more intense some days. There are moments of deep and dark despair that terrify me. It is exhausting, and no amount of tech has eliminated it for me. 

The risk we face when there is exaggeration about the functionality and cleverness of diabetes tech is that those not directly affected by diabetes start to think that it’s easy. In the same way that insulin is not a cure, diabetes tech is not a panacea. Setting aside the critical issue about access, availability, and affordability, even those of us who are privileged to be able to use what we need, still probably find a significant burden placed on us by diabetes. 

This isn’t new. Back in 2015 when Australia was the launch market for Medtronic’s 640G, it was touted as an artificial pancreas, and I wrote about how troubling it was. I stand by what I wrote then:

‘Whilst this technology is a step in the right direction, it is not an artificial pancreas. It is not the holy grail.

Diabetes still needs attention, still needs research, still needs funding, still needs donations. We are not there yet, and any report that even suggests that is, I believe, detrimental to continued efforts looking to further improve diabetes management.

All of us who are communicating in any way about diabetes have a responsibility to be truthful, honest and, as much as possible, devoid of sensationalism.’

It’s why I frequently plead that anyone who refers to CGM or Flash GM as ‘non-invasive’ stops and stops now. There is nothing non-invasive about a sensor being permanently under my skin and being placed there by a large introducer needle. Tech advances may mean we don’t see those needles anymore, and we may even feel them less, but they are still there!

We still need further advancements. We still need research dollars. We still need politicians to fight for policy reform to ensure access is easy and fast and broad. We still need healthcare professionals to understand the failings of technology, so they don’t think that we are failing when we don’t reach arbitrary targets.

We still need the public to understand how serious diabetes is and that even with the cool tech, we need warm hands to help us through. We still need the media to report accurately. And we still need whoever is writing media releases to be honest in their assessments of just what it is they are writing about.  

Keep it real. That’s all I am asking. Because overstating diabetes technology understates the efforts of people with diabetes. And that is never, ever a good thing. 

Amazing. But not an artificial pancreas.