I’m a little cranky this week. At least, that’s how it may seem with some of the ways I’ve been responding to things I’ve seen online.

Yesterday, mice were cured again which was awesome and wonderful if I were a mouse, as suggested in the photo to the right.

Alas, I am not, so I felt the way I usually do when I hear of diabetes disappearing in rodents – ambivalent, as I crabbily pointed out to anyone who would listen. (It was quite timely when this article came across my radar which did a good job explaining how mice and humans are different and therefore what works for a mouse may not work for a Renza…or any other human.)

And then there was Monday’s post about the Twitter discussion about how much power and influence healthcare users have in the healthcare system (spoiler alert: the answer is very, very little…).

But today, I’m writing about an ongoing Twitter discussion that has me shaking my head for different reasons.

I wasn’t around the diabetes world when home blood glucose monitors came onto the market. I was handed a meter the day I was diagnosed in 1998, and I was able to take myself off to an NDSS outlet and pick up strips. Blood glucose monitoring was expected then, and I was easily able to access what I needed to meet the recommended glucose monitoring treatment I was prescribed. I remember being told just how essential it was that I prick my finger and check my glucose levels before meals and before bed – at least. This was the technology that was readily and affordably available to people in Australia and healthcare professionals were very, very in favour of using it.

But it wasn’t always the case.

In the early 1980s, home blood glucose meters started being offered to people with diabetes to take home and use. It was the start of self-monitoring blood glucose (SMBG) – before this, it was all about weeing on a stick and analysing colours. The advent of SMBG is certainly one of those moments on the diabetes timeline that stands out as an important step in diabetes management and improved care.

At the time, there was a lot of criticism of this new-fangled device, with many HCPs believing that it wouldn’t take off, the expense was needless and that there was not enough evidence to support the ongoing subsidisation of such technology. According to a short reflection piece to BMJ in May 1998, the introduction of SMBG had clinicians believing home glucose monitoring ‘a dangerous practice’.

As insulin pumps became more popular, the same attitudes were emerging and in 2001, when I decided I wanted to start on a pump, I had to doctor shop before I could find an endo who would agree to filling out the necessary paperwork. The reasons for refusing my request ranged from ‘You’ve not had diabetes long enough yet,’ (I started on a pump almost three years after diagnosis) to ‘They’re not safe’, and ‘There’s no evidence a pump will improve your A1c’, to which I replied ‘Okay – but will it let me sleep in on a Saturday morning and present more flexible food timings and options? Because my quality of life is seriously impacted on having to freedom to live my life because of the restrictions my current diabetes treatment regimen demands and I am becoming burnout and resentful of it right now.’

I wish I could say that these ideas ceased when I started on a pump, but we still hear today people being refused pump therapy for a litany of reasons that, quite frankly, don’t hold water in most cases.

And then, the arrival of CGM was met with exactly the same reaction. ‘It will make people obsessive,’ and ‘there’s no evidence to suggest that it actually improves clinical outcomes and A1c’ and ‘It’s a gimmick – we have blood glucose monitoring that works just fine,

This, despite a recent talk I attended at ADA where endocrinologist, Steve Edelman from TYOCD declared:

Which brings us to the the Twitter discussion this week which centred around FreeStyle Libre and concerns that there is not enough evidence to warrant subsidy of the product in the UK (following a report on the device from NICE in the UK). Arguments shared in 140 characters or fewer very much centred on the lack of evidence about the Libre.

I understand the arguments: clinicians were calling for randomised control trials (RCTs) to provide the evidence they feel comfortable with before they are willing to recommend a product: they want evidence to support clinical outcomes (i.e. lower A1c).

The problem here is that RCTs are costly, take a lot of time and often don’t measure anything more than clinical outcomes. Plus, they are rarely, if ever, co-designed by the people impacted by whatever is being studied.

It was the same sentiments as when other new tech was released into the market. Often it’s new diabetes tech that provides the user with more information, more data….and more control over how and what they are doing to manage their diabetes.

The pattern repeats itself each time there is something new: clinicians are wary (which, it could be argued is their role), people with diabetes are excited. In the case of Libre, I know of many people who, after years of refusing to measure their blood glucose due to pain and intrusion, have started actively monitoring their glucose and making meaningful treatment decisions due to the ease of Libre. One woman said that it has meant that for the first time in over a decade she feels she actually has some idea of what is going on with her glucose levels which has resulted in her making smarted food choices.

As I read the tweets, I started experiencing very strong feelings of déjà vu. And I also was once again reminded of why so many subscribe to the #WeAreNotWaiting movement. And I ask: Is it any wonder that people are hacking diabetes devices and building their own systems to do what we want them to – what they are capable of doing – now?

P.S. Just a reminder that there is currently a stakeholder engagement underway following a submission to list FreeStyle Libre on the NDSS. You can read all about it here (where you’ll also find the link to take you to the survey).

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