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Sometime last week, I marked a year since I started using Loop. Measure for measure my diabetes is a lot nicer to deal with these days and I know that I have settled into the comfort that comes with something that just seems to be working. The predictability of loop seems to fly in the face of all that is diabetes, so I do admit to not getting too comfortable with it all – even after fifty-two weeks of seemingly boring diabetes.

This was startlingly obvious to me when I reflect on my last two very busy weeks. As I ran around the Adelaide Convention Centre last week, not once did I think about Conference Hypo Syndrome. As I flew from Melbourne to Sydney to Adelaide and back home to Melbourne, I didn’t think, even for a moment, about travel lows and highs. And throughout the busy days, and the long busy nights of the two weeks – which involved hours sitting still in sessions and meetings as well as times of a lot more activity – apart from a cursory glance at my Loop app, diabetes didn’t bother me.)

It has been almost 12 months since I first spoke about Loop at a health professional conference, and it’s fair to say that I am still slightly traumatised by the memory of that session. I know that for the vast majority of the people in the room on that rainy day in Sydney, most had never even heard of the world of DIY diabetes, and the idea that a forty-something-year old woman with diabetes was standing before them talking about how I’d built my own pancreas was more than a little terrifying. And they let me know about it.

There was disbelief, horror and alarm that I was telling my story. I repeatedly heard people tell me that this was irresponsible and unsafe. And a number of HCPs were shocked, worried and appalled that the instructions for others to do what I had done were freely, easily and openly available online. (My cheeriness about open source wasn’t mirrored by most at ADATS.)

I’m pleased to say that wasn’t the response last week, during or following the DIYAPS symposium ‘The Brave New World of Diabetes Technology’, which featured me sharing about my own personal experience of why I decided to, and my first year of Loop; David Burren speaking about the technical aspects of the DIY technologies, and Cheryl Steele encouraging HCPs to support people using these technologies. The formal presentations were rounded out with Greg Johnson launching the Diabetes Australia DIY Technologies Position Statement.

It was standing room only, and great (and surprising) to see a number of endocrinologists in an ADEA symposium. We deliberately programmed the session to have a lot of time for questions, because we knew there would be lots! And there were.

There were a number of questions from the audience about what the role of HCPs is if someone comes to them and says they are, or they want to start, looping, and I think the consensus is that while we don’t necessarily need our HCPs to understand the intricacies of the specific technologies, and we are very clear that we don’t want, expect or need them to be able to help us build our loop, we need them to acknowledge that DIYAPS is a reality for more and more people with diabetes.

The overall feeling in throughout and following our symposium was of interest and curiosity. But even more, a desire to truly learn and understand more about the #WeAreNotWaiting world and where HCPs fit into it all, and how they can support those of us making the choice to loop.

The shift in the attitudes of health professionals is significant and important, and it extends far beyond DIY diabetes technologies. Because it all comes back to the whole idea of choice. There will never be only one right way for all people with diabetes. It doesn’t matter if we are talking about the foods we choose to eat, the technologies we choose to use, where we decide to see how HCPs, our decision to wait or not wait, or the support and services we choose to link in with. We need to have the space to do what is best for our diabetes. We need the freedom to make the choice. And we need our HCPs to support our decisions.

I have already shared this, but in case you missed it, the three presentations from our symposium can be watched here:

DISCLOSURES

My travel and accommodation to ADC was funded as part of my role at Diabetes Australia. Thanks to the ADS and ADEA for providing me with a media pass to attend the Congress. 

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The day before the Australasian Diabetes Congress (ADC) started, Ascensia Diabetes Care brought together a number of Australian diabetes blogger and advocates for the Australian Diabetes Social Media Summit, #OzDSMS – an event that promised to tackle some interesting and difficult topics in diabetes. The social media component was relevant for a number of reasons: the #TalkAboutComplications initiative that The Grumpy Pumper would be speaking about had been (and continues to be) driven on social media; and we really wanted to share as much as we could from the day on different social media platforms to ensure that those not in the room had a clear picture of what was going on and were able to join the conversation.

This planning for the event happened after one of those brainstorming meetings of minds and chance that sometimes occur at diabetes conference. I caught up with Joe Delahunty, Global Head of Communications at Ascensia at ADA because he wanted to speak with me about the launch of their Contour Next One blood glucose meter into the Australian market. And from there, plans for the social media summit were hatched. Joe isn’t afraid to look outside the box when considering ways to work with PWD, and his idea of a blogger event tied in beautifully with the ADC which would already have a number of diabetes advocates in attendance. We both knew that we needed a drawcard speaker. So he sent us Grumps.

One thing was clear from the beginning of the event’s planning – we wanted this event to tackle some issues that aren’t always readily and keenly discussed at diabetes gatherings. It is often a frustration of mine when following along industry-funded advocate events that the topics can seem a little frivolous, and there is the risk that they can seem a little junket-like because most of what is being shared is selfies from the attendees in exotic locations. (For the record, I am always really proud of the Aussie DX events hosted by Abbott because the programs don’t appear as though we’ve been brought together to do nothing more than celebrate our lack of beta cell function while swanning around Australian capital cities.)

The #OzDSMS program was simple – three talks plus a product plug. The discussion was going to be led and directed by the PWD in the room, but the Ascensia team wanted to be part of that discussion, rather than just sitting and listening.

Grumps led the first session in a discussion about how the whole #TalkAboutComplications thing came about after being diagnosed with a foot ulcer. Although he had prepared a talk and slides, the conversation did keep heading off on very convoluted tangents as people shared their experiences and asked a lot of questions.

For the second session, Grumps and I drove a discussion  focused on decision making and choice when it comes to diabetes technologies, with a strong theme running through that while the people in the room may know (and perhaps even use) the latest and greatest in tech, most people using insulin are still using MDI and BG monitoring as their diabetes tech. (For some perspective: in Australia, there are 120,000 people with type 1 diabetes and about 300,000 insulin-requiring people with type 2 diabetes. Only about 23,000 people use insulin pumps as their insulin delivery method. And there would not be anywhere near that number using CGM.)

This certainly is interesting when we consider that most online discussions about diabetes technology are about the latest devices available. We tried to nut out how to make the discussion about the most commonly-used technologies relevant – and prominent too.

Also in this session was a conversation about back up plans. While this is one of Grumps’ pet topics (he wrote about it in one of his #WWGD posts here), I think he met his match in David Burren, our own Bionic Wookiee. Between the two of them, they have back up plans on top of back up plans on top of back up plans, and over the week came to the rescue of a number of us at ADC who clearly are not as paranoid well organised as them.

Yes, there was talk of product. Ascensia’s Contour Next One meter was being launched at ADC, so there were freebies for all and a short presentation about the meter. (For a super detailed review of the new meter and the app that accompanies it, here’s Bionic Wookiee’s take.)

It makes sense that device companies use these sorts of events as an opportunity to spruik product, especially if it’s a new product. I am not naïve enough to ever forget that we’re dealing with the big business of medical tech, shareholders, ROI and a bottom line. But as I have said before, I WANT us to be part of their marketing machine, because the alternative is that we’re not included in the discussion. I’ve not drunk the Kool Aid – I’m fully aware they know that we will have some reach if we write about their product. I’m also fully aware that even though our bias should always be considered, the words remain our own.

I was super pleased that during the small part of the day dedicated to talking about the device, the presentation wasn’t simply about trying to blind us with all the fancy bells and whistles included in the meter. Instead, the focus was on accuracy. As I wrote here, accuracy will always be king to me, because I am dosing a potentially lethal drug based on the numbers this little device shows me. (Well, these days, I need it for when I calibrate my CGM which will then inform Loop to dose that potentially lethal drug.) Accuracy matters. Always and it should be the first thing we are told about when it comes to any diabetes device.

We moved to the Adelaide Oval for dinner for a final presentation by CDE and fellow PWD, Cheryl Steele, who also spoke about accuracy and why it is critical (this went beyond just talking about the new meter). I walked away considering my lax attitude to CGM calibration…not that I’ve necessarily made any changes to that attitude yet.

It was an exhausting day, but a very satisfying one. There was a lot of chatter – both on- and offline and it felt that this was just the start of something. Ascensia has not run an event like this before and hopefully the lively discussions and engagement encourages them to see the merit in bringing together people with diabetes for frank and open dialogue about some not-so-easy topics. While this event was exclusively for adults with type 1 diabetes, I think people with type 2 diabetes, and other stakeholders such as parents of kids with diabetes, would benefit from coming together to share their particular experiences and thoughts in a similar event setting, and potentially some events which bring different groups together to hear others’ perspectives.

As ever, I felt that this event (and others like it) go a long way towards boosting opportunities between PWD and industry, and I am a firm believer that this is where we need to be positioned. Thanks to Ascensia for allowing that to happen; thanks to others from far and wide who joined in the conversation – we were listening. And mostly, thanks to all the advocates in the room for contributing so meaningfully.

Disclosures

I was involved in the planning for the Ascensia Diabetes Care Social Media Summit and attended and spoke at the events Grumps attended. I did not receive any payment from Ascensia for this involvement or for attending the Summit. They did provide lunch and dinner, and gave me a free Contour Next One blood glucose meter. And an almost endless supply of coffee. Ascensia has not asked me to write about any of the work I’ve done with them. But I will, because I like to share and I know there are people who are desperate to know what was going on while Grumps was here!

Grumps was here as a guest of Ascensia Diabetes Care, who brought him to Australia to be the keynote speaker at the Ascensia Australia Diabetes Social Media Summit and to speak at other events about his #TalkAboutComplications initiative.

My travel and accommodation to ADC was funded as part of my role at Diabetes Australia. I would like to thank the ADS and ADEA for providing me with a media pass to attend the Congress. 

In yesterday’s MJA, there was an article about diabetes apps, written by two Australian endocrinologists, Dr Rahul Barmanray and Dr Esther Briganti. The article is a commentary of concerns of current apps in a highly unregulated system. (Read it here; or read the MJA Insight article here.)

There are currently over 1,500 diabetes apps available online. At the World Diabetes Congress back in 2015, Ellie Strock from Voluntis reported there were 800. The growth here is substantial and will only continue.

Most diabetes apps (in fact, most medical apps) are in no way regulated. In Australia, only a very small number have been through the TGA approval process. (Also at WDC in 2015, Ellie Strock said that of the 165,000 mHealth apps that were available at that time, only 103, or 0.06%, had FDA approval.)

I think that the writers are right: we need to be better at gathering and providing some decent evidence about the efficacy and safety of these apps (just as with any diabetes management tool). And it was great that they highlighted privacy issues: apps collect a lot of data (personal as well as medical), and some if this is shared with third parties. People with diabetes should be aware  of – and have a right to know – just how our data is being used.

However, I found the article to be sightly alarmist, and somewhat out of touch with aspects of day-to-day diabetes, and what PWD are looking for when it comes to digital solutions.

The realities of diabetes mean that every single day, we are making many, many choices and a lot of those are to do with dosing of insulin. We do this by combining the information we’ve been given by our HCPs, what we have come to learn about our own particular brand of diabetes, what we have learnt from our peers, and the technology we choose to employ to help us deliver that insulin. For me, that technology is a highly sophisticated app that provides me with bolus advice after I tell it how many carbs I’m about to eat. Once it has worked out its calculations (clever Loop!) I either agree and tell it to deliver, or override and put in my own number.

The article states:

‘Although apps increasingly advise on insulin doses, there is minimal published information on safety and efficacy, despite these apps effectively providing drug treatment recommendations without health care professional oversight.’

This sentence made me shake my head in disbelief. ‘Drug treatment without HCP oversight’ is my every day with diabetes. In fact, it’s reality for just about every person I know using insulin. Do HCPs really believe that they, and they alone provide oversight into our insulin doses?

There are a number of things we need to think about here. Firstly, as so often, we need to consider education. Apps should never be considered the ‘set and forget’ way to manage diabetes…but then, neither should any diabetes technology. Actually, neither should one-off diabetes education!

Our day one education when using insulin must start to provide an understanding of how it works, and that education must be refreshed and refreshed and REFRESHED. Even as someone in the ‘hand out all the diabetes technology at diagnosis’ camp, I know it is essential that people with diabetes understand insulin to carb ratios, insulin sensitivity factors and how to calculate our bolus insulin doses.

The thing is – we’re not getting that education a lot of the time. And if we don’t know we need it, we don’t know to ask for it. If we’re turning to apps to help us manage our diabetes, we probably do need some guidance about how to stay safe while using them, especially if PWD are diagnosed today when we expect there to be technology – such as apps – to make things more convenient.

Are the apps any less safe than what people are already doing with the limited education that is on offer for most people? I am astounded at the stories I hear of people diagnosed with diabetes being sent home with a syringe and a bottle of insulin and told to come back in a few days. I hear this repeatedly, so perhaps shouldn’t be too astounded.

We can’t blame the technology for not being accurate or smart enough if we haven’t been given the education to know that! Somewhere in there must be some HCP responsibility to educate PWD on what works and what doesn’t. And part of education these days must be about using technology, safely – with acknowledgment that technology is more than just a blood glucose meter, and does indeed include phone apps.

Apps exist because there is a gap in the market. That gap is that people are looking for ways to help make diabetes a little easier, whether that be prompting us to take our drugs at a certain time of the day, log and analyse our glucose levels, collecting and storing carb and other nutrient values for different foods, or helping us to calculate bolus doses.

We look to technology (including apps) to help us, and to work with and augment what we already know through the education we have received or have learnt from our HCPs – or at least, should have received.

While many of the apps claim that they will help lower A1c, I do wonder if that is the main reason that PWD decide to try a diabetes app. Is it that they are looking for improved diabetes management, or is it really just wanting some help in the constant tasks required to manage diabetes effectively?

As always, I look to my own experience as the only one I truly know and understand, and I can say with great confidence that I have never ever taken on any app with that intent. It’s always been about making things easier and reducing the burden of diabetes. Today, I rely on a highly unregulated app to do a lot of my day to day diabetes management. But because I have been fortunate to have the education I need, I am confident in doing that.

Apps are not evil or dangerous. TECHNOLOGY is not evil or dangerous. The real risks to people with diabetes is not having the right education to make informed, educated, confident decisions and choices about our diabetes; that same education that would help us assess the safety of the apps mentioned in the article.

Look, I am not saying that there shouldn’t be concerns about unregulated apps, or that we shouldn’t be having these conversations. Of course we bloody well should (and should have been for a long time; apps are not new).

But in there with the criticism and concern, there needs to be more acknowledgement of why people are turning to apps. Because otherwise, it looks like just another example of HCPs trying to stifle advancements in diabetes technology.

My highly unregulated app of choice, in a highly unregulated world of apps.

Official ‘Look! We’re at a conference!’ photo.

One of the best things about going to diabetes conferences is finding time to speak to, and bounce ideas off, fellow people with diabetes. It’s always so great to hear others’ ideas and opinions – sometimes I find myself nodding in furious agreement, and other times their views are completely opposite to how I see things. 

A couple of weeks ago at the America Diabetes Association Annual Scientific Meeting, The Grumpy Pumper and I spoke about a post I was writing (and subsequently published last week) about using the latest diabetes technologies at diagnosis. I knew that he would have some strong thoughts on this topic. 

Grumps said he had some concerns with my ‘give us all the tech right now at diagnosis’ approach, and today, he’s written his thoughts. (Seriously – my pestering him to write is paying dividends these days! Note to self: keep on it!)

Here’s what he has to say…

_______________________________________________________

I’m not really sure if this is a What Would Grumpy Do (#WWGD) post or not. Or if it’s just rambling of the kind of crap that occupies my tiny brain on a daily basis.

Anyway…

Last week, the Nigella of the DOC posted about the use of diabetes tech and how early someone should be offered it post diagnosis(Renza note: Grumps: We’ll be talking about that nickname next time we catch up…)

This subject always interests me, and, to a point, concerns me.

Don’t get me wrong: I love the idea of everyone having the choice of whatever kit they want and need to manage their diabetes, as early as possible in their journey with diabetes, to be able to relieve their own personal burden of diabetes. This also goes for parents and carers too – (those that manage diabetes in a different way, for or with the person with diabetes, dependent on their age etc.).

Of course, the utopian world is for a fully functioning ‘Artificial Pancreas’ (AP) to be commercially available and affordable; a world where at diagnosis, everyone has access to this and the information to make an informed choice if it’s right for them; a world where for most, if not all, that burden of diabetes is not even realised…

My interest and concern?

Well, my job, (as uninteresting as it sounds to most), is business continuity. Or planning for what happens when (as an organisation) things go wrong: when technology that you rely on is unavailable; when your supply chain lets you down; when there is a skills shortage to carry out the things you need to do.

As a result, my brain (tiny as it is) constantly sees the possible risk of what could go wrong, and the mitigations and plans. (The saddest part? I actually enjoy it…)

You can maybe see where I’m trying to go with this now?

The more we rely on diabetes technology, and the earlier we do so, then we (in my opinion) need to have better contingency plans in case things go wrong.

Our ultimate safety net is hospital. However, none of us want to have that as our contingency, do we?

Continuity planning isn’t complicated: it can be detailed; it’s often dull. Ideally it never has to be implemented, but inevitably it does.

The official definition of business continuity is:

‘…the ability of an organisation to maintain essential functions during, as well as after, a disaster has occurred.’

Basically: the ability to carry out the essential things you need to do when shit goes wrong!

I’ll try and keep this brief since I can see you are already dropping off to sleep.

For me, with my diabetes management, it breaks down to this:

Essential functions (the minimum things I need to achieve):

  • Avoid DKA
  • Stay in a safe glucose range (so wider range than usual target, and sod any talk of flat lines!)
  • Be able to detect and treat hypos
  • Be able to fulfil driving regulations

Tasks I need to do to achieve the above:

  • Get a measured amount of insulin into my body
  • Be able to check my glucose levels
  • Treat a hypo when detected (meter or hypo awareness)

Critical tools needed to achieve the above:

  • Insulin
  • Insulin delivery method
  • Blood glucose monitoring system
  • Hypo treatments

The level of continuity that you wish to plan for is total up to the individual. Ideally, we usually try to plan for minimum disruption.

My current diabetes kit is:

  • Insulin
  • Insulin Pump
  • CGM
  • Blood glucose meter
  • Hypo treatments (various)

Whilst I am lucky enough to have spares for most of this kit, I, in my opinion, benefit from being old school. My journey to diabetes technology has been progressive and having started on injections (via syringe) I am confident that I have the skills to keep myself safe if all my technology failed.

As a result, my base-level back-up is:

  • Insulin
  • Syringe
  • Blood glucose meter (and of course strips)
  • Hypo treatments (or cash to purchase as a back-up to my back-up)

So, there you have my interest…

My concerns?

Skills shortage.

In that utopian world where all go onto AP at diagnosis, how do we ensure that we have the skills to stay safe if technology fails? Or if a suppler fails to be able to get a component to us? Let’s face it, a hurricane in the wrong place can cause production issues that lead to shortage of supply; transport strikes; fuel shortages. All of these, and more, have possible impacts.

So if we don’t have the skills to implement our back-up plan, then what use is it?

Some would argue that PWD would need to be educated on MDI etc., which is very true. However, it is another thing for most adults to know how to inject and actually doing it for the first time.

Then there are children with diabetes. Diagnosed as a baby and on a pump soon after, the child may never know how to inject. Until they need to. That could be a huge psychological thing for any child.

There is no one easy answer. As always, and as I said above, our ultimate safety net is hospital so we should always be safe.

But my advice to myself is:

  • Have a plan
  • Know how to use it
  • Wear sunscreen

Live Long and Bolus!

Grumps

Want more from The Grumpy Pumper? Check out his blog here. And follow him on Twitter here

I am a master outsourcer. I outsource as much as I possibly can – from cleaning our home, doing our garden, washing the car and grooming our dogs. I used to feel guilty about this. Then I realised that doing these sorts of things make me irritable and bad-tempered, and it’s better for everyone – mostly and especially me – to just get someone in to do them so I don’t need to a) do them myself and b) get shitty because they are not getting done. (I should add that Aaron feels exactly the same way. He has no desire to do any of those things either, so the outsourcing is a joint decision and one that makes for a far more harmonious home.)

The other day, a new outsourcing device made its way into our home. Despite having someone frequently come and give our place a thorough clean, three dogs and a cat make for grotty floors. Most days, the timber floorboards need a quick going over to gather the dust bunnies and pet hair that collects in corners. Not anymore! This little helper is going to take care of that from now on!

Outsourcing makes sense. And as I have become older, wiser – and some may say lazier – I continue to look for ways to help with the more mundane things in life.

Hello, diabetes…

Many years ago when my diabetes – and I – were not in a great place, I mentioned to an endocrinologist (not my current endo), that I was so overwhelmed by, and over diabetes and I wished that there was a way that someone could do it for me for a week or so. ‘You can’t outsource your diabetes to me,’ she snapped. I’d not suggested her being the one to step in and take over, but she was adamant that it wasn’t going to happen – just in case I was considering asking. (She was promptly sacked after that comment.)

I frequently hear people (myself included) say that the most relentless thing about living with diabetes is not being able to take a holiday from it. It’s true. Even if you have someone helping with caring duties, the toll of having this unwelcome visitor using your body as a guesthouse is unyielding. And even when we manage to find a way to share the load, (for example, partners doing night-time glucose checks, or being responsible for keeping hypo stores replenished, or scheduling HCP appointments, or making sure that insulin prescriptions, glucose strips, pump consumables, sensors etc. are all ready and available at home), there is no sharing or removing the load of the emotional toll of having diabetes.

So with all this in mind, I was a little surprised to hear myself say that I had ‘outsourced my diabetes’ when, at a recent presentation I was giving, a HCP asked me about Loop. I’ve been thinking about that comment quite a lot since I made it. Is it really accurate an accurate thing to say.

I guess that to an extent, it is partially true. I spend less time thinking about diabetes and less time ‘doing’ diabetes. Loop takes over a lot of the things I used to do. This was reiterated in Justin Walker’s talk at Diabetes Mine’s DData Exchange event on day one of ADA last week.

Loop doesn’t make diabetes go away. It doesn’t even take away all the tasks – I still am responsible for making sure that my pump cartridge is loaded, cannula is in working order, sensor is reading. But thanks to the automation, it does take away some of the responsibilities. I guess that the reduced burden comes from the positive results I see every time I look at my Loop app – jut knowing that it is doing its thing and will let me know if something is wrong – takes away some of what I once had to do myself.

Outsourcing is about sharing the load. It’s about handballing some of the tasks and responsibilities of life to someone – or something – else. Loop is the very definition of that!

Our home was built in 1913. It’s a beautiful Edwardian house with a ridiculously high peeked roof and gorgeous ornate features.

I love that although the house still has all its beautiful old world character, it has modern touches that make living in it in the 21st century much easier and far more comfortable than when the house was first built.

I have no interest in living the way the original inhabitants of our home lived. I like knowing that when I walk into the house after work today the hydronic heating will have been programmed to have switched on half an hour earlier to take the chill out of the air. I love that the Aga stove is still nestled into a corner of the kitchen, but the fan forced oven on the other side of the room takes no time to heat up for when I want to bake a batch of brownies. (Or these blondies which I made a couple of weeks ago, and are my new favourite 10 minute bake up!) I love that hanging from the pressed metal ceilings are electric lights that switch on and off as needed.

I am more than happy to give a nod to the old, and admire its loveliness. But I don’t want or need to live that way.

Period features galore.

It’s how I feel about diabetes. I can only imagine what diabetes was like many years before I was diagnosed. But I have no desire to sharpen needles, boil syringes or pee on sticks and analyse the colour that appears after ten minutes to give me a not-especially-accurate idea of how much glucose is floating around in there.

And yet, in most cases, people with diabetes are asked to step back in time with older management options before we earn the right to use newer management techniques. We are told this is done so that we understand the basics. Or have a back-up plan if things go wrong. But surely there is a way we can tick those boxes while still being able to utilise the technologies we choose to use – even the newer ones.

If I were newly diagnosed today, I would want to go straight onto an insulin pump and CGM. Obviously, I would need to learn to do blood glucose checks because CGMs in Australia need calibrating. That should simply be part of the training. And yes, I’d need a back-up plan in case my pump stopped working, but again, providing basic information about how to do an injection and insulin doses could also be part of that training – and repeated at follow up visits.

Why should we have to learn how to use old methods of treatment when there are newer methods that might suit us better?

The other day, my daughter asked me how she would manage diabetes if she was diagnosed. (Her question was the prompt for this post.) After I remembered to breathe again, I suggested that it would be up to her and that I’d support whatever she chose. ‘I’d want to Loop,’ she said. ‘I see how you are and I think that’s what I’d want, too.’

I thought about it and realised that most – all? – people who are newly diagnosed are put on MDI and BG monitoring, and I thought that there is no way that I would want that to be the only option offered to my kid if she were diagnosed. It seems archaic to me.

I would want all the options presented to us, including the ones we’re told we have to earn our stripes for before we are allowed to use them.

Now obviously, I’m coming from this with the perspective of someone who is not new to diabetes. Twenty years of living with diabetes under my belt, a job at a diabetes organisation and a career in diabetes activism and advocacy means that I would be far more in the picture than someone who is completely new to diabetes. I totally get that. But I also know that I think everyone diagnosed with diabetes should have access to the latest and greatest if that’s what would be right for them.

But why can’t that initial training be inclusive of back up plans?

Also, I do wonder if we are setting ourselves up and falsely believing that by having our back-up plans we are all sorted in case of emergency. I have not had a pump break in over seventeen years. I guess I’d be fine doing an injection, but apart from probably half a dozen times where I have injected to bring down a stubborn high, I’ve not had to use a syringe or pen. My back-up plan of long-acting insulin frequently is out of date. How confident would I be if my pump died this afternoon and I needed to go back on MDI for a few days? Not especially confident, I have to say, even though I know how to do an injection. (For the record, I have a spare pump. So MDI is actually the back-up plan for my back-up plan.)

This is just another one of those ‘it’s about choice’ situations. At ADA last week, I attended a CGM update. (Two things to note about this session. Firstly, it is held at 5.30am and I was there at kick off. Secondly, the coffee was shit and I was seriously feeling grumpy. But despite that, I managed to pay attention and hear what the speakers had to say.) Viral Shah MD in his presentation encouraged the use of CGM from diagnosis of type 1 diabetes (with a strong caveat of it must be up to the PWD to make that decision).

And one final point: CGM is not new technology. Neither is pump therapy. These are established, well-researched and safe technologies that have been around for a number of years. So why are they not offered as first line treatments?

On Saturday, I had the pleasure of attending the Australia Diabetes Society’s (ADS) annual Insulin Pump and CGM Workshop. I’d been invited along another ten or so people with diabetes who already wear CGM or Libre to share our insights into living with and wearing sensing devices.

(Quick shout out to the ADS. For those who don’t know, the ADS is the professional body for endos in Australia. Over the last few years, their leadership team has been absolutely instrumental in finding ways to better include PWD in what they are doing. As an organisation, they have been innovative, and responsible for ground-breaking initiatives such as the Enhancing Consulting Skills resource. We need our professional bodies to be like this. And we need them to work with us so that we can provide our perspective to the work they are doing.)

The idea of the workshop is for endocrinologists to have hands on experience of the technology rather than just what they see and are taught at industry events. (For the record, the industry events are super important because they are an opportunity to learn about the shiny technical side of things. And get branded pens. Pens are awesome.)

Discussion was the focus of this session. There was no long presentation with people taking notes. Instead, we were asked to sit at tables with endocrinologists, and encouraged to share our the real life experience of wearing the technology.

Now, I don’t know about you, but this is always the way I want to learn and to share information. I seem to get annoyed at sessions when I have someone speaking at me for ages, telling me what they think I need to know. I much prefer to have discussions and watch conversations go off on tangents, providing attendees with the details and information that is relevant to them; that they will be able to take home with them and put into practise.

The thing about having PWD in the room is that we have a tendency to hold little back. My friend Jodie and I were at the same table. We both wear Dexcom, but our experiences are quite different. (Or as I put it: ‘She does what she’s meant to. I don’t’.) This was actually a master stroke, because it showed the endos just how varied our experiences can be. And that while what works for one person may not necessarily work for another, there really may not be a ‘right’ way to do things.

Jodie and I demonstrated putting in new sensors so that the endos could see how the actual insertion works. We talked about using an alcohol swab where we were about to site our sensor (in this case, I was the one following the instructions I’d been taught when I first started using CGM. ‘ Yeah…I can’t be bothered,’ said Jodie and I wanted to high five her and welcome her to the dark side of non-compliance.)

There was one endo at our table who was pressing every single one of my ‘OH-YES-LET’S-TALK-ABOUT-THAT’ buttons, and the first thing she said when we removed the sensor from the packaging was ‘Why is there so much waste in there?

We spoke about the fact that current Dex sensors don’t have reusable inserting devices and that really, the companies could perhaps do a little more to find ways to reduce waste, while continuing to produce a sterile product. (The G6 apparently has addressed this…)

At one point, the Dexcom rep. mentioned the share function on the G5, and as if by magic, my new favourite endo jumped in with ‘Who makes the decision as to whether or not their data is shared.’ I wanted to hug her, but it was the first time we’d met and I thought that might be a little creepy. But yes; oh yes! We were going to talk about consent.

The absolute best thing for me was that not once as I shared by clearly (and absolutely owned) deliberately non-compliant CGM existence, did one of the endos look at me with disdain, shake their head, raise an eyebrow or tut tut. They asked how what I did made things better for me.

Some examples of questions and my answers:

Why do you wear the sensor on your arm and not your stomach?

I find it more comfortable and it reads more accurately. Plus, it lasts longer there than on my tummy.

Why do you restart the sensor?

Because I’m frugal and don’t want to fork out $90 every seven days when I know it works perfectly well for me still at 21 days 

Look, the Dex reps should turn away right now, block their ears and pretend that they don’t understand me, because I am going to be really candid about this. Firstly, I am going to say that I adore this product. I would say that no matter who is in the room – I’m not sucking up to the AMSL reps because I’m hoping they’ll throw some free product my way. They don’t and that’s fine. I mean it. This is a brilliant product that I literally trust with my life. But there are some things that piss me off…

Sensors are around the $90 mark. They are approved for use for seven days. But at the end of those seven days, the sensor is still working perfectly. In fact, many people report that it works even better after the first week. Why should I throw out a perfectly good, working product if it is still doing what it says on the box? 

I know the risks. I am choosing to do this myself and I am more than happy to own it.

But while we’re on this topic. The transmitter is AUD$540 every three months. That’s right, after three months, it stops working. The batteries are still good to go for a couple of months, but the device is factory set to stop working. Now, this has been done with a whole lot of safety considerations in mind and I understand those. But again, a device that is not rechargeable and still has some use in it has to be thrown out.

So, I don’t really have any qualms about using all sorts of DIY solutions that allow for the transmitter life to be extended.

I’ll say it again – I know the risks. This is about me and no one else. I am happy to take those risks.

So, you don’t calibrate it as recommended. Why?

Because sometimes, stopping whatever I am doing to calibrate is not something I want to do. Plus I’ve been wearing this for over 2 years now and I’ve learnt what to trust and what not to trust and how to use it safely. I have set my own boundaries that I feel are acceptable and perfectly safe.  

Do the alarms bother you?

They used to. But now I’ve managed to customise them to a way that works for me. I have all the alarms on now, but in the past, I had all the high alerts and alarms disabled because they pissed me off so much. But the predictability of Loop means that the alarms are rare and I generally I have the headspace to respond to them as they happen. (Although the please calibrate one can drive me nuts sometimes.) 

Do you share your CGM data?

I have in the past, but I don’t these days. As an adult with diabetes, I make that decision and there have been times when I’ve liked the idea of someone having my back – usually when I’ve been travelling solo. But since I’ve been looping there has been no need.  

What’s Loop?

Um…we’re going to need a longer session… Here’s the address to my blog. Sorry for all the swearing.

After the event, the event organiser sent me a lovely text message, thanking me for my time and for speaking at the Workshop. She said that the CGM session was a highlight for many of the attendees. ‘People with diabetes make the best teachers,’ she added. And she’s right. When we are talking about what it’s like to actually live with these device on our bodies and in our everyday life, we really are the best people to talk about it! HCPs are great at talking about the science and the clinical side of things. But we make diabetes real because we are living it. You can only get that when you go straight to the source. And yes; we’re the source.

Disclosure

The ADS provided me with a $50 gift voucher to thank me for my time on Saturday. I was also given one Dexcom sensor to insert at the Workshop which I am still wearing. (And will do so for the next three weeks or so…)

I’m a little late to the whole Black Mirror thing. Aaron has watched through all four series and has repeatedly told me that I should get onto it, but I’ve just not been in the right mood to start and work through a new sci-fi series. (For anyone equally behind the times, Black Mirror is a Netflix series.)

However, there was one episode in particular that Aaron, and a couple of other people, suggested I watch. It is called Arkangel. The Netflix description for this episode is:

Worried about her daughter’s safety, Marie signs up for a cutting-edge device that will monitor the girl’s whereabouts – and much more.

The device (called Arkangel), an implantable chip, allows Marie to see her three year old daughter, Sara’s, location and vitals – blood pressure, heart rate, cortisol levels etc. – in real time. But more than that, the chip allows Marie to actually see exactly what Sara is seeing – not to watch her child as if there were CCTV cameras everywhere, but to see the world precisely as her daughter is seeing the world. There are parental controls that allow Marie to change what her daughter sees, effectively, blocking out (by pixilating) anything not PG-rated. The device was completely controlled via an iPad-type device and would alert if Sara was in any distress.

Arkangel was sold as a way for parents to know that their children were safe at all times. And what could possibly be wrong with that? It’s what all parents want. Right?

About ten minutes into the episode, I looked over at Aaron. ‘This is making me really uncomfortable,’ I said to him. Watching Marie getting on with her life, with the Arkangel tablet device next to her for easy access to what her daughter is experiencing at that moment, made me feel very uneasy. Every single thing her little daughter saw was replicated on the tablet.

As the episode progressed, Sara got older and Marie continued to monitor her daughter’s every move. But by the time she gets to about ten years old, Sara starts to question her mother’s use of Arkangel. Sara has come to realise that the parental controls mean she had never seen, and therefore could not understand – a lot of things her friends were talking about. Marie decided it was time to put Arkangel away. The tablet was switched off and stored in the attic, and Marie and Sara got on with their lives.

Until Sara hit teenage-hood…!

One night, after discovering Sara lied about her whereabouts, Marie reactivated the Arkangel tablet to locate her daughter, and see what Sara was up to.

My neighbour, Jo, was one of the people who urged me to watch this episode. She knew that I would see what she had seen when she watched the episode. And I did, immediately recognising the parallels between sharing of CGM data and Arkangel. And the issue of consent, or rather, the absence of it.

At the Roche Diabetes MeetUp at ATTD this year, I  joined in a very robust conversation about the whole idea of sharing CGM data. There were adults with diabetes and parents of children with diabetes in the discussion, each with their own idea about the value of the technology.

A number of adults were appalled at the idea of sharing data, claiming it was simply a way for others to spy on them.

Personally, I am very apprehensive about sharing my data. Of course, this is a highly personal way to feel about the technology and there are other adults who absolutely love the idea that there is someone else keeping an eye on what’s going on with their glucose levels, and able to make sure they are okay if there is a problem. It makes them feel safer and more confident – and if that’s what people get from the technology, it’s only a good thing. But I am not sure just how comfortable I am at having someone see every high or low.

But we are adults – fully formed and grown and making decisions about ourselves and our diabetes, forourselves and our diabetes.

I also completely understand that as a tool, CGM sharing is one of, if not THE, most valuable and essential tool for parents to feel confident that their children with diabetes are safe at school, or other places, when they cannot be with their child. I know that CGMs with share capabilities have, in many cases, completely changed family dynamics for the better.

So when I question the technology and what it can do, I’m not in any way searching for answers about the value of the tech – that is indisputable in my mind. But I am questioning the issue of consent.

While it may make perfect sense for an infant in day care, or a primary school-aged child to have data share activated, what happens when the child starts high school. Or begins university? Or moves out of home? At what age does the idea of having the ability to remotely monitor someone’s CGM data become the decision of the person whose data it is?

I don’t think we have had these discussions, or thought through the long-term implications of CGM data sharing. And I worry that we still seem to not be having those conversations.

When the episode of Black Mirror ended, I felt unsettled. I actually noticed that my heart rate was elevated. I was rattled and had trouble sleeping that night, and I couldn’t help but see Arkangel as a cautionary tale.

Where are the conversations about consent? Where is the line in the sand when it comes to who makes the decision about data sharing? Obviously it will be different for every family, but where are the guidelines or conversation starters to equip people to make those decisions? If this is not being discussed at the time that children and adolescents are commencing CGM, why not?

These are not easy conversations to have – and, quite frankly, as an adult with diabetes, one diagnosed as an adult and not the parent of a child with diabetes, I am not sure that I am the right person to be even talking about it. Some might (and undoubtedly will) say that I should pull my head back in because I don’t understand the situation at all, and simply stop talk about it.

But someone does need to. And I think that it needs to start happening right now.

Last Friday, as I was getting ready to fly home from Copenhagen, I realised that the beautiful city was being inundated with some of my favourite European diabetes bloggers and advocates.

I was lucky enough to manage to meet up with the truly wonderful Tine who I have come to know and love through my involvement in the Roche Blogger program. When it comes to dynamic, sassy, smart and downright wonderful advocates, Tine is at the top of the list. We caught up briefly, talked about diabetes and language, and drank iced coffees and I am so glad that I got to see her gorgeous face.

Tine. She is so wonderful!

Unfortunately the rest of us were ships in the night and probably standing right near each other on opposite sides of the departure/arrival gates divide at Copenhagen airport. Brutal!

My friends were in Copenhagen to meet with the team from YpsoMed, which they do a couple of times a year, to talk about the YpsoPump and other YpsoMed products, advances in diabetes technologies and come together for some peer support. Some of them are using the YpsoPump, but certainly not all of them.

I’ve had a play with the YpsoPump a few times in recent years. My good mate Finn, who blogs here, (in German; Google Tanslate is your friend) stayed with us a couple of years ago when he visited Australia, and I tried bribing him with Tim Tams in exchange for his YpsoPump. Alas, my tactics didn’t work. (Apparently he needs it to infuse insulin into his body or something.)

And each year at EASD, I would annoy the team on the YpsoMed stand by demanding to know when they were bringing their pump to Australia. (This is standard line of questioning for me at international conferences when I see technology I like the look of and thing we should have access to. I am probably known as the annoying woman from Australia, a badge I am willing to wear and a cross I am willing to bear.)

Yesterday, the YpsoPump was launched in Australia. I’d like to think it was my pestering, but the reality is that it is a smart move by a company that has been around the diabetes world for some time now and saw a market that is truly crying out for some choice.

Lucky us!

So, here are a couple of things of note about the YpsoPump

  • Undeniably, the first thing that is abundantly clear is the size of the pump. It is teeny-tiny compared with other offerings. The Medtronic 640G, in a side by side comparison, looks like a monster. (This was one of my criticisms when I trailed that 640G a couple of years ago. It felt bulky, clumsy and huge!) The YpsoPump is streamlined and sleek, and sits comfortably down my bra. (First thing I did with it. I know; all class.)
  • The touchscreen and icons are a departure from the buttons we have come to expect on insulin pumps. When the pump is ‘sleeping’ it is completely black and blank. This adds to the sleek look of the device.

(Having a little play at EASD last year.)

  • It is pretty easy and intuitive to use. We got to have a play and set up the pump yesterday and it was simple and logical. Loading and priming the glass cartridge was quick. The cartridge holds 1.6ml of insulin – this is not a pump for people on huge daily doses of insulin.
  • The pump uses and is integrated with a smart phone app (search MyLife from the App Store to download for free). At this stage it is uni-directional, so the pump cannot be driven from your phone. (i.e. The pump speaks to the phone/app; the phone/app doesn’t speak to the pump.) However, this is something that will, in the future, happen. (‘In the future’ apparently means a couple of years.) For those of us Looping, we shake our heads, because we are currently doing this and it makes no sense that regulatory processes are holding up something that is already available and perfectly safe. It also negates the whole thing about discretion when it comes to the pump. If you still need to pull it out from under your clothes, it doesn’t matter how small the thing is – you still need to pull it out from under your clothes!
  • Really pleasingly, customer service is all being run out of Australia which means that whoever you speak with has a really good understanding of the Aussie health system. This is especially useful for ironing out any potential glitches with getting approval through PHI.
  • Consumables are already on the NDSS. Want this pump? It’s ready to go. Talk to your HCP!

Two other things I asked about were a little broader than simply the use, design and practicalities of the pump.

Firstly, I wanted to know what was going to be done to protect us from coming to love this device, only to see it disappear from the market in four or six or eight years’ time. I have lived through the loss of the beloved Cosmo pump (I LOVED that pump!) and now Animas. While for some this can be seen as just an evolving market, I think it is much more than that. We are intimately connected with these devices. We see pumps come and go from the market. We invest in them, we become attached to them (literally and figuratively). To have them disappear from the market is heartbreaking for some people. I was grateful that Eberhard from YposMed acknowledged our disappointment. He told us that the company has been around for a long time and is very invested in continuing to provide new, innovative and cutting edge technologies to the diabetes market. I hope he is right, because I can see people falling in love with this pump very easily.

And secondly, I wanted to know what sort of engagement YpsoMed were doing to ensure that what they are delivering (they have a lot of things in the pipeline, including a patch pump due for release in 2012/22) really aligned with what people with diabetes want and need. Their engagement with the community is strong and they seem committed to it. The European blogger group has been meeting regularly and provide feedback on design and development. The launch of the product into Australia was with consumers (the HCP launch is today). There is definitely a desire to work and link closely with people in the community and that should be commended.

Just some of the advocates and bloggers at the YpsoPump launch yesterday.

With the YpsoPump ready to go in Australia, we are seeing increased choice in the pump market. No longer should we feel pushed into a pump that we don’t really want because that’s all there is, or all that is supported. This is only a good thing for people with diabetes.

You can find out more about the YpsoPump by going here.

DISCLOSURES

You bet! YpsoMed flew me to Sydney, put me up in a hotel, and fed and watered me. They did not pay me for my time, nor for my words. They did not pay me to ask annoying questions – or to not ask annoying questions for that matter. You can and should consider this when reading what I have written today.

We have a beautiful tree over the back laneway at our place. Usually at this time of the year, it is in full autumn brilliance. The red and gold leaves catch the gorgeous afternoon sunlight, and where the leaves have already littered to the ground, the branches are bare.

But this year, things have been a little different. Our tree brought out its autumn clothes a much later than usual, but sure enough a couple of weeks ago, we noticed that the leaves were beginning to turn. Every day, I’d look over the fence to see a deeper red, a more golden glow. Sure, we hadn’t needed to turn the heating on inside the house yet, and my really warm knits were still tucked away in the cupboard, but the tree was promising winter and cooler days.

Blossom buds. In May…

Over the weekend, as I sat in the kitchen, the back door open letting in a lovely breeze, I looked up at our tree. And there, on the bare branches, I could see something shooting. I went outside to have a closer look and realised that what I could see was the start of the blossom that comes out in the middle of springtime.

Our poor tree was looking mighty confused. I was confused. This isn’t how things go. The seasons are meant to be somewhat regulated and ordered.  I like order. Order makes sense. This didn’t make sense at all to my brain, which likes things to be as they should be!

This wasn’t the only confusion I dealt with this week. Last Friday, I spoke about DIY diabetes technology at a health professional event and there was a lot of confusion.

I only had ten minutes (seriously not long enough to talk about something that is a completely novel concept to most of the audience), so I spoke fast, waved my hands around faster and tried to simplify the whole idea of looping into about 8 slides. ‘Renza will be around afterwards if you have questions,’ the emcee announced to the audience who all looked slightly bamboozled and winded after I finished.

There were questions. Lots of them about how Loop works, what it really is and who can use it.

But the one thing that seems to garner the most confusion is the cost. ‘You didn’t say how much has cost you,’ a few people said to me once the event was finished. Actually, I did. (Admittedly, very quickly, because: 10 minutes!) ‘Well, you need to source a pump that works, so that may be costly. And if the person using it is over 21, they will need to fund CGM themselves. Plus, the Riley Link is about $150 and there is a cost associated with becoming an Apple developer,’ I repeated what I’d said in my talk. (Obviously, I was talking Loop, but there was an OpenAPS user in the room too and I think he may have answered a couple of questions about the cost of his set up.) ‘No, no…what about the actual cost to use the app? How much does that cost?’

I have had this question asked probably more than any other. For some reason, people don’t seem to understand the concept of open source information sharing. No one is making money through this. The clever people who have developed DIY diabetes solutions place the details online for anyone to see and use. For free.

But this seems to be a confusing concept for a number of people.‘Wait. So no one is making in money from this? What about the people who worked it out in the first place? They are. Right?’ 

‘Nope,’I always reply, wondering how many ways I need to say it (along with wondering why I am so lousy at communicating things and also, if my hands waving around are distracting people).

Inevitably, the next comment is ‘Well, I’m not sure why someone doesn’t try to commercialise it. That would get it through regulations, wouldn’t it?’

At that point, it’s my turn to look confused. Why is it so difficult for people to understand that there are actually people in the world who genuinely want to do something good for others? Or that the WHOLE point of the #WeAreNotWaiting ‘movement’ is the fact that there is no waiting for regulations that are inevitable with commercialisation?

I guess that unless you are part of this community, it could be difficult to understand. But the generosity of those in the community is on show all the time. Whether that be the people doing the grunt work behind the scenes to make the dreams of DIY diabetes a reality, or the people who are then writing the step by step instructions so even fools such as me can follow those instructions, or the incredible community members who are ready to jump in any time to answer SOS calls for help when something doesn’t seem to be working, these people are doing it all for nothing more than the gratitude of those of us who are reaping the rewards of their cleverness and kindness.

The confusion – and disbelief – about this community is confusing to me, because every day I see how incredible it is. I only wish I was smart enough to give back even a fraction of what I have received from those brilliant folks who are there for the rest of us. And I really wish I was able to do a better job explaining what a marvellous bunch of people they are!

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