CGM

Sign the Petition in Support of CGM Access for All

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I’ve been using FreeStyle Libre intermittently since May 2016, before making the leap to full time CGM in September 2019.

Today, continuous glucose monitoring is something I couldn’t live without.

I acknowledge my privilege in being able to say this.

I can’t imagine not being able to glance at my phone and see updated blood glucose readings every five minutes, or the safeguard of having alarms alerting me to out of range levels while I sleep.

For most adults in Australia, with the exception of those who meet strict eligibility criteria, funding for CGM comes out of our own pockets. Those who do meet the strict criteria face losing access to the subsidy once their circumstances change – whether it be turning 21, no longer being pregnant or no longer qualifying for a health care card.

The only way that I can afford this technology right now is through the generosity of the diabetes community. By using transmitters that have been very generously donated and rebatteried, and by restarting sensors that are hanging on my arm by a thread.

Even that still costs me a good $1,500 or so per year.

There’s a pretty important petition that’s been circulating recently on the Parliament of Australia website, calling on the government to fully subsidise CGM for all Aussies with type 1 diabetes.

If you haven’t done so already, please take a moment to add your signature and then share the link far and wide.

https://www.aph.gov.au/petition_sign?id=EN2168

From the bottom of my busted pancreas, thank you.

Tandem t:slim X2 Insulin Pump Launches in Australia!

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Tandem’s t:slim X2 insulin pump officially hit Aussie shores last week at the Australasian Diabetes Congress. It will be distributed by AMSL Diabetes here in Australia as a successor to Animas, which is in the process of exiting the pump market. AMSL invited me to a launch dinner in Adelaide last week, where I had the opportunity to play with (but not keep) this new diabetes toy.

AMSL diabetes will be upgrading all of their customers with an existing, in warranty Animas Vibe insulin pump to the t:slim over the course of the next 12 months at no extra cost. Customers will need to return their old Animas pumps within one week as a condition of receiving the upgraded pump. This is a part of AMSL’s contract with Animas.

This upgrade is basically treated as a replacement for the pump I have already paid for two years ago. Then, in two years when my warranty period is up, I will be eligible for another through my private health insurance. It makes complete sense. Besides, AMSL will only have limited capacity to service Vibe pumps now that Animas have gone out of business.

AMSL have a dedicated transition team looking after upgrades, and they will be getting in touch with eligible customers over the next twelve months. You will need to go through a healthcare professional, which is regulatory, but frustrating considering I already know how to use an insulin pump! I hear that upgrades are expected to commence in October, however customers who wish to remain on an Animas Vibe will also be supported.

During the evening we heard from Aymeric Lecanu-Fayet, Senior Director at Tandem Diabetes Care in the States. The t:slim was designed based on over 6,000 interviews of people with diabetes, attempting to close the gaps that prevented people from using an insulin pump. Things like making it look modern like a smartphone, easy to use and easy to learn.

Kerri Bandelin, International Clinical Manager at Tandem then took us through a workshop with the pump.

The tslim has the option of integration with a Dexcom CGM, and the battery is rechargeable. The charge will last for 5 days if you’re using it with CGM integration, or 7 days if you’re using it standalone. The rechargeable battery is also covered under warranty in the off chance that it does get damaged. Those non diabetic lines sure are something to envy!

Users are normally encouraged to recharge their pumps while they’re in use. Suggestions were while on the couch, in front of a computer or while in the shower. We were also told that there is no such thing as over charging this pump, something I’m always mindful of when leaving my iPhone plugged in for too long. A full charge takes 1.5 hours on a dead battery, but I also got the impression that short charges of 15 minutes won’t do any damage to the pump’s battery.

We were told that the pump can be used with Animas infusion sets, but not insulin cartridges. Tandem consumables are on the ship as we speak, and I’m pleased to hear that there will be an option of angled sets. I was also pleased to hear that Australia will be receiving t:slim pumps with an updated algorithm that won’t trigger unnecessary occlusion alarms.

Insulin goes into a black hole, which is a bit concerning for detecting air bubbles. The minimum fill is 95 units, with the cartridge having a capacity of 300 units. We were told that there is also a thermometer inside the cartridge which can alert to risks of spoiled insulin. Carb ratios could be adjusted in increments of 0.1 when going past the 1:10g mark. There are also 6 different basal profiles with 16 different time segments.

The most promising feature for me is the ability to receive upgrades to this pump in the same fashion as upgrading your iPhone’s software. Basal IQ with Dexcom G6 is expected to launch this Australian summer, but is not yet approved. The system predicts glucose levels 30 minutes ahead and suspends insulin if levels are expected to drop below 4.4mmol.

We were told that this upgrade would be free, however I wasn’t impressed to hear that I would have to go through a healthcare professional every time there is an upgrade. I know there are regulations. But considering I already know how to use an insulin pump and spend relentless hours managing my diabetes on my own, it definitely feels like an insult to my lived experience.

Also in the pipeline is Control IQ. This upgrade would automatically adjust basal insulin levels in response to CGM readings, as well as deliver automated correction boluses. I would stress that this is only in its infancy, with a current 6 month study happening in Germany. Tandem would also not confirm whether this update would be free or not. I also got the impression (not an official comment) that the blood glucose target on this system would be better than the 6.6mmol target on the Medtronic 670G.

We were told that the pump would fit inside the coin pocket of a pair of jeans. What I didn’t like was the bulky case with a clip that added significant bulk to the pump. It was heavier than the YpsoPump at 113g, and here’s how it stacks up against the late Animas Vibe that I was wearing. We were told it is the size of a credit card.

It felt refreshing being able to type in numbers, rather than scrolling through until reaching your desired number. Nice and modern and sleek to use, just like the YpsoPump.

While I don’t think CGM will be in my budget anytime soon, I do feel hopeful that we are getting close to finally closing the loop.

Finally, we have a hashtag happening. A completely selfish one.

It’s #TslimForFrank.

Please jump onto social media and use it generously.

I have been dreaming of this little pump hitting our shores since forever, and I would love nothing more than to provide you with a user experience.

Disclosures: AMSL Diabetes hosted me at a dinner on Wednesday evening with a group of other Aussie diabetes bloggers. I was already in Adelaide for the Diabetes Congress as a guest of Diabetes Australia. I was fed and watered across the duration of the evening, and received a small bag containing a powerbank, information packets and an AMSL penguin. There was no expectation that I would blog about the t:slim. My opinions and my time, including the annual leave I had taken from work to be there, are my own. 

Why I Am Waiting.

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Unless you’ve been living under a rock, you’ve likely heard of the whole We Are Not Waiting movement. You know, a bunch of people who are hacking their diabetes devices in order to enhance their functionality. Such as transmitting blood glucose data to other devices, turning a FreeStyle Libre into a CGM with alarms and even closing the loop between an insulin pump and a CGM.

You need look no further than the name of this movement to find the reason for it. People with diabetes really are at the mercy of device companies, regulatory bodies or, in the case of the snippet I read in yesterday’s paper, researchers who are currently attempting to regenerate organs in sheep!

I don’t see a cure on the horizon in the next ten, twenty or even thirty years. The business of business is business. Advancements no longer feel like a solution, but rather a pathway to the next enhancement or product. Both consumers and device companies seem too focused on feeding this diabetes technology frenzy.

The most realistic advancement that I do see on the horizon is a commercial closed loop system. That is, an insulin pump that communicates with a Continuous Glucose Monitor to automatically regulate blood glucose levels. There are a few systems currently in development in the US. Yet I don’t realistically see any of these getting into my hands here in Australia in the next five, dare I say ten, years.

I need look no further than the current insulin pump situation here in Australia. If online communities are anything to go by, Aussies are crying out for a new insulin pump option to hit the market here. There are insulin pumps listed on the TGA website that can be legally sold here in Australia, and yet we are left waiting at the mercy of distributors, device companies, marketers, financial strategists, and all of the other powers that be.

Better yet, it’s 2018 and people are still forced to do all sorts of questionable things in the name of INSULIN, the drug with a price tag that is skyrocketing by the day.

I have been reading up on the likes of hacking a FreeStyle Libre system and closing the loop over the past couple of months. There is a growing community of people here in Australia who are buidling and running homemade closed loop systems, and you can lurk or join them here.

I, however, have made the regrettable decision that I will have to wait.

For starters, I would have to commit to full time Continuous Glucose Monitoring. This is not currently subsidised for adults like me here in Australia. Nor is this, as well as the other hardware required, in my current budget while I am working toward other financial and career goals. Secondly, I don’t own a pump that is loop-able, and I don’t like my chances of being able to get my hands on one.

Finally, I’m not sure that I would be able to give any ‘we are not waiting’ efforts the due focus that they would inevitably require at the moment, with a lot of other priorities on my mind for the year ahead. As one Facebook group admin puts it, don’t bother asking for the idiots guide as these solutions aren’t for the faint headed!

I am frustrated. Not because I’m envious of others who do have the means to do so. Not because I can’t manage. Not because I don’t have good health, excellent access, good people around me or a good quality of life.

I am frustrated, because people with diabetes deserve so much better than what they’re currently getting.

Libre-less

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It’s no secret that I have continued to use the FreeStyle Libre with much enthusiasm in recent months, albeit intermittently. I frequently talk about it on Twitter, I often refer to trend arrows in my blog posts and it’s a popular subject of messages that arrive in my e-mail inbox. Not to mention how instagrammable that graph is, especially when the line is flat.


Yeah, paying $95 to monitor my blood glucose like this every two weeks absolutely sucks. But overall, it has improved the quality of my life, and I am starting to come around to justifying those costs.

For my needs, it is perfect. I check my blood sugar frequently through the day, so this fits the bill nicely in adding some convenience to that. I like that the hardware is minimal, and that it doesn’t use a lot of real estate on my body. The only upkeep is the round sensor every two weeks, which makes it a cheaper alternative to Continuous Glucose Monitoring.

I guess where I have struggled the most is setting boundaries around the data. I find it easy to become obsessed with the numbers after wearing it for too long.

My behaviour hasn’t been too healthy during the life of my last sensor. I’ve been compulsively checking my levels before I’ve even finished my dinner, and again on the couch in the evenings while I’m watching television. The trend arrows have been really frustrating to see at times, and I find it hard to remind myself that they are only temporary. Against better judgement, I do tend to micro manage data, which sends me low far more often than I should be.

So why haven’t I taken a break from it sooner? Firstly, I wanted to give myself every advantage in getting the best hba1c that I could. Turns out that I was being much too hard on myself, because it exceeded my expectations by a country mile. Then earlier this month, I hit a speedbump where I was literally spiking after everything that I ate. I was too scared to be without it until I had figured the problem out. But I am slowly moving past that issue (more on that, soon).

I’ve been Libre-less for almost a week now, and all that anxiety is gone. I stop to check my blood sugar prior to meals, and one and two hours after meals. I’m forced to think about whether I actually need to check my blood sugar, or whether I’m simply doing it because I can. My head isn’t consumed by numbers so much, and my mood isn’t dependent on trend arrows. In fact, the numbers have been better than they were during the life of my last sensor, and I’m not hypoing so often from micro managing.

The morale of this story is that time away from the tech is equally as valuable as the tech itself. It gives me a chance to actually appreciate the tools I am using, and what I’ve been able to achieve with them.

My life is more than just numbers, and time away from the tech is definitely helping me to realise this once again. 

Do Diabetes Tech Companies Really Care?

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A few weeks ago, a post from Medtronic Diabetes Australia caught my attention on Facebook.

“We are asking the Australian Federal Government for a commitment of $4.4 Million this current financial year to potentially save 1,537 lives from the devastating consequences of type 1 diabetes.”

Medtronic’s lengthy article, which you can read here, was basically advocating for the Australian government to fund Continuous Glucose Monitoring. Something that I would very much like to see happen in the near future, evidenced here and here.

I have nothing against Medtronic. I’m sure that my rant would be equally applicable to every other diabetes tech company offering products and services to people with diabetes.

However, I just find this difficult to wrap my head around.

I get that Medtronic, along with every other diabetes tech company, is a business. I get that without companies like Medtronic, revolutionary technology like this would not be available to people with diabetes. I get that research, development, marketing, distribution and other operations cost money. A LOT of money. And then Medtronic is a business, and understandably wants to reap a nice reward for their efforts.

But still, Medtronic advocating for the consumer just doesn’t sit well with me.

I just don’t feel as though they would genuinely care, the same way that I do as I’m writing this post. I don’t feel as though they really care that, to quote Medtronic:

“People who are hypo unaware are six times more likely to have severe hypoglycaemia leading to seizures, coma and even death. Having hypos leads to more hypos and the increased risk of these severe events.”

It just seems as though it’s in their best interests to advocate. It seems as though they have something to gain from their advocacy efforts.

First up, it makes them look as though they are on the customer’s side. It makes them look like they care, lobbying the government for funding towards a life saving device. Big tick for Corporate Social Responsibility there.

Second up, if their advocacy is successful in obtaining government funding, Medtronic has everything to gain. Business! More people will adopt Continuous Glucose Monitoring devices because they are cheaper to run. More people will purchase the consumables in order to continue running the device. And since diabetes isn’t going away anytime soon, there’s a good chance that the customer will keep purchasing the consumables. Triple win!

I hold nothing against Medtronic for running a business. A business that, from what I hear, makes the daily management of type 1 diabetes much easier. A business that, should I choose to in the future, could make my own diabetes management much simpler.

But Medtronic does not have diabetes. Medtronic does not go to bed feeling defeated from a day of highs. Medtronic does not wake up in the middle of the night, sweating from an intense low. Medtronic does not feel the impact of dealing with a chronic condition day in, day out.

That’s why advocacy from a company with a financial interest in diabetes will never sit well with me.