I really wanted to call this piece ‘Hey, ableds, leave our kit alone’, but decided against it.

Over the weekend, two main things seemed to dominate diabetes twitter. The first was the suggestion from a nurse (in a now deleted tweet) that shoving cake frosting (more commonly called icing in my parts of the world) up the arse (more commonly called ass in other part of the world) of an unconscious person with diabetes was an excellent hypo treatment. The second was this picture:

Click to see where this originally appeared on Twitter

Let’s just say that sexually assaulting a PWD to give them glucose is not a good idea, no matter how hypo you think they are. Call an ambulance, rub some frosting (or honey etc.) on their gums, or, if they have glucagon with them, and you what to do with it, use that. Once again, just to be completely and utterly clear, decorating the arse of people with diabetes as if it’s a plain tea cake in need of some ready some embellishing and sprinkles, is not appropriate without consent. If everyone is conscious and there is consent, do whatever you will. 

With that out of the way let’s move to the second fun little incident and that photo. That’s right, it clearly refers to one of the diabetes devices that I and many others use to keep an eye on our glucose levels because the bit of our body that takes care of it broke. 

Even before this photo appeared, there has been a lot of commentary from people with diabetes (PWD) about people without diabetes (non-PWD) using any sort of glucose sensing device. I think that in coming years we’re going to only see more of it as the makers of CGMs and Flash GM start to advertise the allure of glucose tracking to a broader audience, or, as is the case with the little photo above, third party app makers jump on board. 

Because the diabetes community never has one united opinion on things, (although I’m yet to have heard from a PWD who has thought the icing-up-the-bum-for-hypo-treatment idea is a good one), some people are violently opposed to the idea of non-PWD using CGM. Others couldn’t be less fussed about it if they tried. And some actually think it’s great. There is no one way to respond, and everyone’s feelings are valid. 

I have a lot of feelings wondering why non-PWD would want to do diabetes. From hypo simulators, to wearing a pump with saline in it, and lining up to get an A1c checked for fun – I’ve seen it, and I’ve written about it. Again, no one needs to agree with my feelings, although it seems from the feedback I get, a lot of people do. 

But I have to say that the idea of CGMs as a weight loss tool was a new one for me. I understand that some people who are deep into the keto way of life use them, but my understanding of this is so they can repeatedly prove to themselves (and badger others) that eating meat causes minimal changes to glucose levels, but eating grains of rice make lines move. 

I did a bit of a deep dive into the company behind this picture, (they are not the only one that is moving to capitalise on the excitement and interest around biohacking) and all I could find was a whole lot of pseudo-science speak that just screams scam to me! It preys on the insecurities of those who are trying to find happiness in the latest and greatest wellness fad. But this time, they claim to have science on their side. 

This isn’t new. Weight loss cons from ‘teatoxes’ to fat-busting pills to miracle diets to superfood super-promises, have been around for years. There is a reason that new players come onto the market every week, and that reason is not because they work. It’s because we have diet industry worth billions, we have people – often young girls – being told their worth is tied up in the number on their scales, and we have people desperately looking for something that will work to get them to that number, and get them there quickly. 

To explain their claims, they use science-speak to suggest that there is a medical side to what they are doing. It seems that the ‘trust me, I’m a doctor’ line works well for a lot of people. As do the words around graphs, data and glucose statistics. That might work for people who haven’t spent a shedload of time around doctors talking about graphs, data and glucose stats, but those of us who do, might see this as a load of bullshit. 

This, directly from the company’s website claims that the app ‘…provides an immersive experience that shows you a continuous line graph of your glucose data; provides alerts when glucose spikes or dips out of your weight-loss range’.

Weight-loss range? I really don’t understand what that means because the only time my glucose levels have equalled weight loss is when they have been off-the-charts high. Such as before I was diagnosed with diabetes, and the time I was in DKA thanks to gastro. I doubt that the idea is to somehow send people without insulin-requiring diabetes in DKA, because that is going to take a lot more than just banging a sensor on your arm, and loading an app onto your iPhone. 

Of course, that’s not what they mean. They are suggesting that by keeping glucose levels withing a tight range (the ‘weight-loss range’), there will be no excess glucose needing to be stored as fat. 

There is limited evidence to support that measuring glucose levels on non-PWD is beneficial, so the science is shaky to say the least. But that doesn’t stop the program being presented as super science-y and evidence-based. And for a lot of people, that illusion of science means they think that the subscription cost (because there’s always a subscription cost!) is worth it. 

But let’s move away from that for a moment, let’s ignore the lack of science, the cost and the hint that this could be nothing more than a money-making scam, targeting vulnerable people, because there is more that comes into play which explains why so many in the diabetes community push back at non-PWD wearing diabetes devices. 

Continuous glucose monitors were created for people with diabetes to better manage our condition. They give us access data that helps managing our diabetes like never before. They are life changing. They are life saving. They are also only available to a small percentage of the global diabetes population. I haven’t even touched on the fact that generally, it’s only people with type 1 diabetes who have access. People with other types of diabetes are even less likely to be able to get subsidised or funded CGM, even though many of them might benefit from using them. 

The idea that CGMS are toys of privileged biohackers, and being used exclusively as a weight-loss tool does not sit well with many. It does not sit well with me. If I look at Australia, only half of people with type 1 diabetes have subsidised access to CGM. The rest of us are left to having to find about $4K per year to fund the devices that really make a difference to our lives, that some of us say we couldn’t live without.  

The weight-loss focus from this particular company is problematic when considering the higher rates of disordered eating, and insulin omission or restriction in people with diabetes for the purposes of weight loss. Some claimed that seeing CGMs heralded as being about weight loss, when they are using it as part of their eating disorder recovery was triggering. These factors all come into play within the diabetes community. 

And finally, the idea that increasing use to a far broader community will bring down the cost…? Let’s just be reasonable about that (or sceptical…) and say that’s not going to happen. If that was the case, the fact that every keto-follower worth their ketosis now regularly checks their ketones, would mean that blood keto strips would be cheap as chips. That’s not the case at all. 

The potential of medical devices being used outside of the reason they were created is likely to be explored a lot more in coming years. With (non-healthcare) tech companies moving into the space, it is not only possible, but highly likely, that glucose sensing (albeit non-invasive) will become standard on wearables, in the same way step counters have. But we’re not there yet. Right now, the best use of these devices is where the evidence points – on the arms (or bellies, or thighs, or wherever!) people with diabetes are wearing them, to assist with diabetes management, to help us with our decision-making process, and to improve our lives.

NOTE:

In this piece, I mean ALL people with ALL types of diabetes, including pre-diabetes. Basically, any condition that means an individual needs to consider glucose levels.