When headlines have consequences

For the last 25 and a half years, I’ve used an insulin pump to keep me alive. I’ve been using CGM almost full time since 2013, and sporadically before that.

Today, newspapers across Australia have published a fear-mongering report dressed up as serious investigative journalism about the safety of diabetes technologies and devices.

This is why we can’t have nice things.

Let me start by clarifying a couple of things. Firstly, the stories quoted from a few people with diabetes who have had genuinely frightening experiences with their technology should not be minimised. I understand how terrifying they may have felt when the devices they relied on didn’t behave as expected. And now they have made them question the safety of their devices.

And, secondly, I am fully aware of the shortcomings of diabetes tech. Of course I am. I’d be lying if I said I’d never had something go wrong in the well over 9,000 days I’ve had a diabetes device attached to my body.

But when I stop and weigh up the risks and compare them with the benefits, there’s no question that diabetes technology has not only been beneficial to me, it means that I am healthier than I thought possible, sleep better and spend far less time consumed by the endless decisions diabetes demands.

Decades of evidence show that use of these technologies improves diabetes outcomes, decreases glucose variability and lowers the risk of diabetes-related complications. My n=1 experience (which, for the record should be irrelevant in anything other than me talking about my own experience) is that these devices mean that I am able to show up as the best version of myself, despite the incredible challenges T1D throws my way.

The reports today highlight an increase in the reporting of adverse events. An ‘adverse event’ can be anything from a pump failure, a cannula blockage, a sensor failing or reading incorrectly or an alarm not sounding as expected.

It can also be device tape not adhering properly. Or skin irritations.

It shouldn’t take a genius to understand that the reason for the increase in adverse event reporting is the significant increase in people using these devices, thanks to NDSS subsidies.

Should we have the right to feel confident that government agencies are evaluating and monitoring the safety of these devices and acting when necessary? Absolutely.

There are thousands of hours of research demonstrating the safety of these devices, and that, overall, the benefits of diabetes technology far outweigh the risks.

I’d like to ask the journalists who have published this beat up and cherry picked lived experience stories: what’s the alternative? Should we go back to injecting insulin and blood glucose monitoring? I mean, there can be errors with blood glucose monitors (or I could not have completely wiped Nutella from my fingers before checking my glucose), so should we go back to peeing on a stick? And should we stop using automated insulin delivery and go back to doing all the calculations in our diabetes-exhausted and burnt out brains? DIY diabetes – and a reminder that all diabetes is DIY – was always far more dangerous to me than any automation from devices.

And I’d ask them where are the stories from the thousands and thousands of Australians who use these devices every day and are not experiencing serious problems?

I’d also like to remind them that people with T1D don’t get the option of opting out of risk. The comparison isn’t between diabetes technology and zero risk. The question is which approach gives us the best chance of staying alive and living well.

The potential damage to advocacy efforts for expanding access to insulin pumps for people with T1D and access to CGM for people with other types of diabetes has been done with this ‘investigation’ – a term I use very loosely here. Or for the introduction of the next generation of diabetes tech. Sowing the seeds of doubt without countering with balance, is irresponsible journalism. And in this case, it’s people with diabetes who stand to lose out.

What you can do today:

Write to Sixty Minutes, The Age and The Sydney Morning Herald with your concerns about their biased reporting.

If what you’ve read has made you second guess decisions about your own tech use, take a deep breath and double check your contingency plans and the limitations of tech we are all told about, and how to minimise them as best we can. If you’re really worried, contact your HCP.

Disclosures, because, jeez, that’s important today (and perhaps could have been clearer from some of the experts in the reports…)

I have used Omnipod, Deltec (RIP Cozmo) and a number of Medtronic pumps since 2001, and Dexcom sensors since 2013 (as well as some Medtronic sensors prior to that, and the occasional Abbott Libre sensor). I currently use Loop (Omnipod DASH and Dexcom G6). I pay for all diabetes devices consumables via the NDSS, and private health insurance covers the cost of insulin pumps.

As part of my health consultancy business, I have consulted for Medtronic, Abbott, Dexcom and Insulet (in Australia and globally). These consultancies have been focused on community engagement, language and communications.