DX2Sydney

Warm Fuzzies

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Last night, this photo popped up in my memories from four years ago.

Instantly, I was filled with a massive warm and fuzzy feeling.

I think out of all the incredible events I’ve been a part of in the diabetes community, this one would definitely be my favourite.

Four years ago, Abbott brought together a group of Aussie diabetes bloggers for the launch of the FreeStyle Libre. While it was really cool that I had scored a trip to Sydney and some cool new tech to try out ahead of others, it was pretty special to me for a totally different reason.

While a lot of these bloggers already knew each other – whether it be that they lived on the East Coast or that they had been around in the DOC a lot longer than I had – I was meeting them for the first time. I had only ever known these people online, mostly through Twitter handles and weekly OzDOC chats that were happening at the time. It was pretty special to embrace people who I felt like I already knew, but didn’t really know.

This was the first time that I had spent surrounded by so many people with diabetes. I did feel like the new kid throughout those two days, amongst a group of people who already seemed so close-knit.

These two days were filled with some bright conversations. To give Abbott Diabetes Care some credit, they have never intended to direct or takeover these events. These DX events have truly been about people with diabetes.

Thankfully, this event wasn’t the last of these conversations. Abbott held subsequent ‘DX’ events that had even lesser focus on their product. PWD have been given many other platforms to have their voices heard since then. But of course, there will always be room for more.

As for me? I’m going to be selfish and say that I’m grateful that it wasn’t the only time that I’d get to see these people, and that they weren’t the only people with diabetes (or people connected to diabetes) that I’d ever meet. I’ve had the privilege of spending more time with these folks, and others, since then.

Four years later, I’m still just as grateful to Abbott Diabetes Care and Weber Shandwick for putting together such a special two days.

This is exactly the warm fuzzy feeling that I need right now.

FreeStyle LibreLink: First Impressions!

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I must admit that I couldn’t get too excited at the news of FreeStyle LibreLink hitting our shoes Down Under. However I was really blown away by the response to my vlog last week, which suggests that perhaps I am in the minority on this new smartphone app.

FreeStyle LibreLink is a smartphone app that can either complement or replace the fundamental role of a FreeStyle Libre reader. So if you are thinking about trialling or getting started with a FreeStyle Libre system, you will no longer need to invest in a $95 reader. I also thought that LibreLink may be advantageous to parents or loved ones, who could have their own access to the data provided they scan the sensor with their respective devices (devices don’t share data).

Abbott told us that while LibreLink was originally due in August, they have fast tracked the launch as a show of their commitment to get their technology into the hands of as many people as possible.

The FreeStyle Libre system utilises Near Field Communication (NFC) technology in order to scan the sensor and obtain a blood glucose reading. In order to use the FreeStyle LibreLink app, your phone must have these same NFC capabilities as the FreeStyle Libre system, and this is the reason for limitations on compatible phone models.

So, blame Apple. Or Samsung. Or whoever else you feel like blaming.

Apple users will need an iPhone 7 or higher, running on iOS 11 or higher. Android users will need a phone with NFC, running on Android 5.0 (Lollipop) or higher.

If you wish to use your reader in conjunction with the LibreLink app, you must activate a new FreeStyle Libre sensor with your reader, followed by the LibreLink app during the 60 minute warmup period. If you do not activate with both devices during the warmup period, then you will only be able to read data with the one device you activated with.

Why can LibreLink only be used with a new sensor, and not an existing one? I am told this is purely for security reasons, otherwise I could theoretically approach anyone wearing a sensor and scan it.

My loaner iPhone seemed to scan my FreeStyle Libre sensor just as well as my reader did. A reading is best taken by pointing the top end of your iPhone, where your ear rests, over the sensor.

One noteworthy feature is the text to voice, which will voice your blood glucose level and trend following a scan. This may prove useful when you’re in bed and don’t want to open your eyes, or if you’re wanting to interrupt someone else’s presentation and show off your reading of 6.6 and steady to the rest of the group (sorry, Kim!).

I also think that the app will be really valuable for accessing blood glucose reports without the need to upload to a computer. I must admit I can’t remember the last time I uploaded my pump or my meters to the computer. In the whole scope of managing diabetes, little tasks like these often slip and features like this really do make a big difference.

LibreLink does not have the capability to transmit blood glucose data to another device. Nor can data be shared between a phone and a reader. You know how you can click on that little forward button when browsing your iPhone to share a link or a photo? That’s basically how you can share things like screenshots or reports from inside the LibreLink app with others.

Everything else that you’re used to seeing in the reader is there, with a bit of an expanded view.

      

Also on the horizon is Libreview, a cloud based software designed as a companion to LibreLink that provides a way to share data with healthcare professionals.

I don’t have any plans to upgrade my old iPhone 6 anytime soon to use the LibreLink at home. I’m also not sure that I view carrying my Libre reader around as a hassle. Having my iPhone on me all the time can be equally distracting. Another reservation I have is the increased demand placed on my iPhone’s resources from the introduction of two new mobile apps in the space of a week (YpsoPump app and LibreLink).

That being said, I have definitely underestimated LibreLink. It’s fantastic that FreeStyle Libre users will have more ways to access and engage with their blood glucose data. More choice for people with diabetes is always a good thing.

The FreeStyle LibreLink app launches in Australia tomorrow, and is available as a free download from your Apple or Google Play store on a compatible device.

Disclosures: Abbott Diabetes Care covered my travel and accommodation costs to attend DX2Sydney. I was fed and watered across the duration of the event. I was also provided with a FreeStyle Libre sensor and a loaner phone if I wished to trial the FreeStyle LibreLink app during the event. There was no expectation that I would blog about anything covered at the event. My opinions and my time, including the annual leave I took from work to be there, are my own.

DX2Sydney 2018

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I’m at home today, nursing a sore throat and a cold which was most likely picked up at the end of Abbott’s third annual DX blogger event in Sydney earlier this week.

DX – which stands for Diabetes Exchange – is now into its third year Down Under. Abbott was the first company in the Australian diabetes space, that I’m aware of, who began talking to consumers when the FreeStyle Libre was launched in May 2016. From there we have seen other companies follow suit, providing more platforms for the lived experience to be heard (no doubt with a little push from some of my fellow diabetes advocates).

It was nice to be reminded of my first encounter with this special group of advocates back in May 2016, and how much my voice has grown and evolved since then. This group of oversharers have become somewhat of a close knit family over a short space of time, with a few new faces entering the fold every year.

While we were primarily convened ahead of the launch of the LibreLink app in Australia on June 5, we also had the opportunity to present some feedback to Abbott on the FreeStyle Libre.

My question to both Diabetes Australia CEO Greg Johnson and the Abbott team was around whether partial subsidies for Flash Glucose Monitoring in the form of co payments would be an option, as seen with our test strips and pump consumables. 

I have only ever seen full reimbursement noted by Abbott in official communications, and wondered whether more of a focus on partial reimbursement would help get the FreeStyle Libre subsidised sooner. Bionic Wookiee David also rightly corrected Abbott’s term of ‘reimbursement’ with ‘subsidy,’ given that consumers won’t be reimbursed for anything should the product receive federal government funding.

Professor Johnson told us that co payments were certainly an option as we often see through Medicare, and that Diabetes Australia were surprised by the Federal Government’s last election promise of fully subsidised CGMs for people under the age of 21.

Abbott’s Regional Director Peter Chalikias told us that reimbursement decisions rested with the Federal Government and the Department of Health, with the company’s priority to get the FreeStyle Libre into the hands of as many people as possible.

Jessica Shi, Abbott’s QA & RA Manager, must have been reading my mind when she addressed the need for call centre staff to better gauge the level of expertise from the person with diabetes reporting an issue over the phone. Nothing is more frustrating than receiving a basic lecture on what interstitial fluid is!

Once again, I cannot express how important it is to get in contact with the call centre should you have any issues with the product. Some of Abbott’s current priorities based on user feedback are cost, adhesion and accuracy. Cost reductions that Abbott are able to make in the manufacture of the FreeStyle Libre get put back into research and development that will potentially help to address these user issues. 

Does that mean we’re likely to see the product shift towards something that more closely resembles a Continuous Glucose Monitor? Would Abbott not prefer customers to be using a more trusted, in house data sharing solution, rather than third party products such as the BluCon Nightrider?

At this stage, it’s understandably not a priority. I personally wouldn’t want to see the FreeStyle Libre change. Providing consumers with choice is important, and the product in its current iteration means that more people will be able to access Continuous Glucose Data.

“Do you feel that you have had any input into the FreeStyle Libre by attending these events?”

My answer to this question I was posed last week was simple. None. 

I don’t have a technical mind. I don’t know anything about all of the research, development and regulatory compliance that goes into making a medical device as such. 

Abbott also know that they don’t need me, or any of the other bloggers in the room to sell their hugely successful product. Yet their continued respect and commitment to hearing what’s important to (highly privileged) people with diabetes through these DX events, is where I hope I am making a very small difference.

Any company operating in the diabetes space that chooses to engage with people with diabetes is a good thing.

It’s been a pleasure to be part of the DX Family.

Disclosures: Abbott covered my travel and accommodation costs to attend the DX event in Sydney. I was also fed and watered through the duration of the event, and received a goodie bag which contained a FreeStyle Libre sensor. There was no expectation that I would blog about anything covered at DX2 Sydney. My opinions and my time, including the annual leave I took from work to be here, are as always my own.

FreeStyle Libre: Second Time Round!

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At lunch time on Saturday, my meter came back with a 3.8. Not satisfied with the result, I walked over to the other meter sitting on my desk, which came back with a 4.7. I decided to do a best of 3 with the second meter, which produced an identical 4.7.

As I picked up the collection of discarded test strips strewn on my desk, it occurred to me that I am using test strips like water at the moment. I mean, I do use test strips like water. But I have never relied on them as much as I have now. And it kind of scares me.

I’m still fine tuning my insulin pump. I’ve made a lot of progress in the past week or two, but I’m not quite there just yet. I’m a perfectionist, I suppose. My diabetes educator has even gone on to suggest as much, having taken a step forward with the insulin pump. I can see it myself, in the great attention to detail I apply towards my basal rates and blood glucose monitoring at the moment.

Yet it scares the hell out of me, that somehow, this might become the new normal. I am scared of relying on glucose monitoring so much, instead of having confidence in my own actions. I am scared that I am becoming too compulsive and obsessive with my diabetes. Most of all, I am scared that I might never get this right.

I’ve recently used my second FreeStyle Libre sensor that I received from Abbott at DX2 Sydney, and naturally, I’ve discovered a few things that I didn’t the first time round. You can find out more about what the FreeStyle Libre is in my first review here.

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The Libre has been a life saver for me at work. I don’t need to walk over to my desk to check my blood glucose levels. I don’t need to worry about how dusty my hands are. It takes a lot of the pressure away from basal testing, where I would ideally stop what I’m doing to check my glucose levels every half hour. It offers a level of convenience that glucose monitoring doesn’t. Not to mention some the weird looks I get!

Most of the time, the results have been extremely accurate – to the nearest 1mmol. However, there have also been times where the accuracy has been difficult to trust.

It’s been hard to rely on the Libre’s readings when my glucose levels are moving significantly, particularly in the first 2 hours after meals. At work, I’ve often felt the need to go and double check with a finger prick before making a decision on a reading of 14 after breakfast.

I’ve also found that the Libre pronounces very small movements in glucose levels. For instance, I remember having an espresso with a tiny amount of milk one morning. I watched my Libre trend upwards to 9 or 10mmol, when in reality the movement wasn’t so big. It did eventually “catch up” with my meter, but I had to remember that the drop did not actually represent my blood glucose dropping.

That being said, I really need this extra flexibility with my blood glucose monitoring at the moment. I recently purchased another two sensors, which will hopefully make things a little easier for me over the next couple of weeks.

I’m just hoping that this reliance on heavy glucose monitoring doesn’t become the new normal. I really want to go back to having more confidence in my own diabetes decisions.

Wordless Wednesday: Testing, Testing

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Basal testing is a necessary evil of using an insulin pump.

After a week of rough blood sugar levels, I decided to start my second FreeStyle Libre sensor that I received at DX2 Sydney to help fine tune my insulin requirements while I’m at work.

Not only did I manage to get through a Monday morning without breakfast, without coffee, and without a banana, but I managed a fairly steady line all the way through.

Small victories.

Happy hump day!

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