Diabetes Advocacy

Diabetes Blogging 101.

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When I started writing here three and a half years ago, it was honestly more of a creative outlet to flex my Marketing and PR muscles. Diabetes sounded like something that I should write about, but I never, ever imagined that actual people with diabetes would be reading my blog.

Today, I think it’s fair to say that my blog has become a lot more than just a blog. I may or may not be classified as a diabetes social media junkie, an oversharer, a freelance writer, speaker, committee member, social networker, an advocate, a diabetes PR service or even a sellout to big pharma!

The diabetes community, both online and offline, has been invaluable to me. I am in a place with my own diabetes that I never imagined possible. I honestly owe it to every single individual that I’ve ever connected with, and every single piece of information I’ve ever been given. I wouldn’t trade being a part of the diabetes community for anything in the world (except maybe, a working pancreas…)

But at the same time, I get the impression that blogs are sometimes seen as merely something ‘nice’ to do. Or that a blogger is often pictured sitting in the comfort of their own home on a Monday morning, typing out a fresh post and then going about their leisurely day.

Blogging is a fairly big investment in the subject area you’re writing about and the cause you’re advocating for. Keeping on top of all of the news, developments, tools and technologies forms a pretty big part of my life. And hey, it also keeps me pretty motivated in wanting to better manage my own diabetes. I do not have a technical or scientific background. Yet as I hear myself talking enthusiastically to others, I realise just how much I have immersed myself into a very technical and scientific world.

There’s a pretty big investment of my own time. Whether it be writing my blog, taking part in advocacy work, responding to e-mails, networking or embarking on diabetes travel, it’s all done in my own time. Evenings. Weekends. Sometimes out of my hard earned annual leave. Often at relatively short notice for the responsibilities and full time job I’m leaving behind that pays for the pancreas that doesn’t work properly.

There’s also a pretty big responsibility in advocacy. When companies choose to speak to people with diabetes, I believe that’s a good thing. While some might see it as accepting tokens from ‘big pharma,’ I see it as a responsibility to tell them what’s important to people with diabetes. While trying to be mindful of my privilege.

I’d also be lying if I said that I didn’t feel a sense of obligation to the community that has given me so much. I know full well that I am a highly privileged person, and that I don’t represent all people with diabetes out there in the world. A mere four years ago, I was in a relatively isolated place with diabetes. I guess a big part of my ‘why’ is to help other people to discover the power of peer support and being engaged in the diabetes world.

For me, the biggest reward that has come from diabetes blogging is all of the amazing people I have met. My tribe of people who have diabetes feel like somewhat of a close knit family. I often arrive home after some amazing conversations with a cup that is overflowing and a newfound motivation.

Diabetes has made my world a lot smaller, and being part of this community always makes me feel that I am a part of something much, much bigger.

One of the occasional perks of diabetes travel…

YpsoPump: The First Few Weeks (Part Two)

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I’ve been road testing the new YpsoPump that launched in Australia last month. If you missed the first half of my review, you catch up here. 

I must admit that I was a little intimidated at the prospect of using Ypsomed’s Orbit inserter to place infusion sets on my stomach. When I last used the Animas insets two years ago, it was a terrifying experience. The insertion process with the disposable plastic insets were so clunky, leaving me with little confidence in whether my insertion was a success, or whether the cannula had kinked on the way in. I can still recall one tumultuous night where I didn’t pick up on a kinked cannula until several hours later when I had high blood sugars and moderate ketones.

Thankfully, I’m finding that the YpsoPump’s reusable Orbit inserter device does a far more efficient job. The plastic cannula that sits underneath the stomach feels much stronger than the Animas sets, which would also help with kinking as well. The infusion sets can also be inserted manually.

The area does feel a little tender after the pressure from the insertion, compared to the gentler manual Animas sets that I’ve been using. Thankfully, this hasn’t been a sign of any site failures. I’ve been cautiously doing my insertions 12-24 hours prior to switching the site, so that I’ll be able to pick up any signs of a site failure. I’ve had one bad site placement so far, and I was able to pick it up straight away (it was just a bit of blood).

I really like that if you do happen to place your site badly, you can simply clip it back onto the Orbit inserter and try again, compared to an inset which is rendered useless once it comes away from the insertion device. It’s also nice to have a reusable inserter device that doesn’t create so much plastic waste like the disposable insets.

Ypsomed’s Orbit infusion sets are cleverly designed to rotate 360 degrees. The end of the pump line clips into place over the top of the infusion site, rather than having to be clipped rigidly into the side of a set.

The downside to this design is that it is challenging to check the skin where the infusion set is placed for any signs of bruising and bleeding. I’m slowly getting used to seeing through the purple coating, with a little help from my iPhone torch.

The sets seem to stick well enough at the centre, although they do tend to come loose around the edges after showers. One thing I am enjoying is less sticky residue left on my skin after removing an infusion site.

There is a choice of Orbitsoft plastic infusion sets (6mm and 9mm) and Orbitmicro steel infusion sets (5.5mm and 8.5mm), with each available in lengths of 45cm, 60cm, 80cm and 110cm. I did try one of the steel sets, but I think I am a bit weirded out by having a needle permanently underneath my skin. While it worked just fine for three straight days, I can’t say that it was as comfortable as the plastic.

Ypsomed’s glass reservoirs hold 1.6ml of insulin, which is slightly less than the 2ml capacity of Animas and may be a consideration for people on larger insulin doses. We were told that insulin in the glass reservoirs could be used in the YpsoPump for up to 7 days, or stored in the fridge for 30 days.

I was also in disbelief as the pump continued to run for up to five minutes while I was changing the battery. There’s no more having to rewind and re prime the insulin cartridge, or worry about losing information about insulin on board. Since I stopped syncing with the mylife app and switched off the pump’s Bluetooth last week, I’m expecting to get around 3 weeks from the AAA alkaline battery.

When I caught up with one of the Ypsomed reps in Perth last week, I expressed just how much I want to hear from other people who have used new diabetes tools and technologies. Even during the pilot phase when I had no idea that I would be getting a pump, Ashley’s insights were so valuable.

People with diabetes need to be part of the conversation, and I’m super grateful that Ypsomed included us in their launch – which is especially generous considering they are relatively new to Australia.

The YpsoPump is available in Australia now. Subsidised consumables are available through the NDSS, although I’ve been told to expect a 7 to 10 day delay as my Pharmacy’s supplier doesn’t carry them. Which is understandable, given it’s a new product and the demand probably isn’t there yet.

A large group of Diabetes Educators attended pump training in Sydney last month, and Ypsomed has also been travelling around to various clinics around the country to train further healthcare professionals. So if you would like to get started on this pump, I am confident that you will be able to find a trained healthcare professional near you.

According to CDE Amy Rush of the Telethon Type 1 Family Centre in Perth, you may be able to get a YpsoPump before your pump replacement is due and Ypsomed will liaise directly with your health fund. I don’t know the details personally, but you can watch Amy’s video here.

If you haven’t already noticed the enthusiasm in this post, I genuinely am still brimming with enthusiasm for this pump four weeks in. I think the size, weight and sleekness of this pump are the real selling points for me.

After the pump complacency and health insurance issues that I’ve dealt with recently, the YpsoPump could not have come along at a more perfect time to help me feel re-energised in the daily grind. I officially ordered a second box of infusion sets last week, and am feeling quite optimistic about our future together.

YpsoPump: The First Few Weeks (Part One)

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I’ve been staring at my chunky old Animas Vibe with its holes in the coating and an interface from the ‘90s, thinking about how I will possibly be able to while away another two years before its warranty is up. I’ve been dreaming up scenarios in my mind where new pump options would arrive on our shores and be rolled out to existing Animas customers sooner rather than later.

But I never, ever, really imagined that I would have one of these exciting new options in my hands so soon.

(This is the part where I tell you that Ypsomed Australia provided me with a YpsoPump and consumables to take home and trial. Followed by the part where I tell you that was no expectation that I would write, or even trial the pump itself. Followed by the part where I remind you that there’s a bias in place and that you should take my enthusiasm with a grain of salt).

I’ve been YpsoPumping for almost four weeks, and I am absolutely loving how sleek and light it is. When I started pumping insulin two years ago, I wanted it purely for the benefit on my blood sugars. I never thought that this sleekness was something that I could ever ask for, or want, in a pump.

It weighs eighty three grams, inclusive of a AAA alkaline battery and filled insulin cartridge. To put that into perspective, It’s about half the size of my wallet and a third of the size of my iPhone. Did I mention that it’s slimmer, too? I hardly notice it in my pocket when I’m lounging on the couch or in bed at night.

It’s also way quieter than my late Animas Vibe. I no longer hear the swish of insulin boluses being delivered. Or that little ‘tick’ every three minutes as the pump infuses basal insulin into my body.

The interface is made of up of predominantly symbols and numbers, rather than words, which definitely took some getting used to.

It also has a touch screen, which can only be switched on by pressing the button on the side of the pump. The main menu also has a three tap access code before you can go in and administer insulin.

Basal rates can be set in increments of 0.01 units per hour, which gives greater customisation than the 0.25 units on my late Animas. The biggest challenge for me is that they can only be set on the hour, rather than the half hour. So when I wake up at 6.30am, I can only set my elevated waking basal rate to run from either 5am or 6am, rather than my ideal time of 5.30am. I’ve been experimenting with some basal tweaks this week, and hopefully I’ll be able to work around this.

I’m also liking the vibrating reminders when my temporary basal rate is finished running. I tend to sleep over middle of the night alarms, but the pump has even woken me up during the night to let me know a temporary basal rate has finished running. It’s a really handy feature to have, reminding me to check my blood sugar and evaluate whether I need to run it for longer.

The biggest difference to my late Animas is that the YpsoPump does not contain a bolus calculator. That is contained in the companion mylife smartphone app. Or any other bolus calculating app, for that matter. So you would need to open your app, work out your bolus, and enter that number into your pump. The app then syncs with the pump via Bluetooth to obtain insulin data. At the launch event, we were told that the pump could eventually be controlled from the app.

I have no problem using a phone app to calculate insulin boluses. I’ve done it before when I’ve taken pump breaks. But I found it frustrating having to wait a good 15 seconds for the app to sync with my pump so that I could do a bolus calculation. I’m so used to being able to quickly glance at my insulin on board during the day before various activities. Not to mention that having my Bluetooth constantly switched on is a drain on both my pump and iPhone battery. As a result, I must say that I’ve been slacking off on bolus calculations.

I expressed to the rep last week that it would be helpful if the bolus calculator worked independently of having to sync with the pump. After suggesting that I could switch my insulin therapy settings to Multiple Daily Injections, I’ve been able to do just that. So long as I’m logging all of my bolus calculations and insulin doses in the app, I’ll be able to see my insulin on board without having to sync the pump via Bluetooth.

The pump can deliver insulin boluses in increments of 0.1 units, which is slightly less than the 0.05 my late Animas allowed. The bolus calculator automatically subtracts insulin on board from a bolus calculation, which might not always be necessary. It also lacks the flexibility to make adjustments to insulin to carb ratios or insulin sensitivity factors for things like physical activity. However, it is working a lot better for me in MDI mode.

I know just how hard a good bolus calculator is to find, and for me a diabetes app without one simply has no value. Ypsomed do appear to see the bigger picture of people who don’t use pumps and CGMs, and I’m confident that the company is working hard to make Multiple Daily Injections and glucose monitoring ‘smarter’ as well.

If you are looking for a bolus calculator, you can search for the ‘mylife app’ in your Google Play or App Store.

Come back tomorrow for part two of my review of the YpsoPump!

Updated: Find part 2 here!

The YpsoPump Launch Event

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My first week with the YpsoPump saw me in holiday eat-and-bolus-without-really-thinking-too-much-about-diabetes mode. Not to mention that it was my return to insulin pumping following a month long break. Week two saw me back at home with one of the worst Winter colds I’ve had in years and some of the craziest insulin resistance I’ve seen. It’s now week three and I’m just beginning to return to some sense of normality with the ‘betes.

Safe to say, I feel as though I’ve already been through a lot with this pump in the short time we’ve known each other. I really am enjoying the YpsoPump for its sleekness and light weight nature, and you can also check out my Instagram stories for more insight here. I’ll have some more to share here soon, I just don’t think I can fairly review a pump without using it for a good few weeks.

I had never even heard of the YpsoPump prior to searching the TGA website earlier this year in desperation for any signs of new insulin pump choices following the demise of Animas. I then noticed fellow blogger Ashley of Bittersweet Diagnosis had been trialling the YpsoPump, indicating that an Australian launch was on the horizon. A bit later on, I was fortunate enough to receive my own invitation to a launch event held in Sydney three weeks ago.

We were introduced to a Swiss company called Ypsomed (pronounced “Ipsomed”). As a manufacturer of tailor made insulin injection pens and autoinjectors, the company vision is to make self care simpler and easier. We were told that the company had a long, successful history of insulin pumps in the world, dating back to 1985. The YpsoPump had been designed to fill the gap in a market filled with complex, medical looking devices.

Ypsomed’s portfolio of diabetes products fall under the company’s Mylife Diabetescare brand. Encouragingly, their portfolio extended to people on Multiple Daily Injections and structured blood glucose monitoring. Products included clickfine needles, lancets, injection pens and a new Unio Neva blood glucose monitor using a custom brand of test strips. Not to mention that YpsoPump’s companion ‘Mylife’ smartphone app would also be useful to people not on a pump (it’s a free download from your App or Google Play store).

We were shown a roadmap of future upgrades to the YpsoPump system. This included the addition of the Unio Neva blood glucose meter that would send blood glucose readings to the Mylife smartphone app via Bluetooth. Ypsomed are also in discussions with manufacturers to add CGM integration into the pump. The YpsoPump will eventually be able to be controlled remotely via the smartphone app, but this looks to be at least 12-18 months away.

Ypsomed is also manufacturer of the wildly popular Omnipod tubeless insulin pump, which received TGA approval some time ago but has not yet managed to surface. The NDSS funds insulin pump consumables here in Australia, while private health insurers fund the actual device. Ypsomed have not been able to find a way to fit the funding model here in Australia due to the disposable nature of the Omnipod.

In response, we were told that a smaller ‘YpsoPod’ is currently in development with an expected 2021/22 completion. One half is disposable while one half is durable, meaning that this pump would fit the funding model in Australia.

Everything sounded really encouraging, with Ypsomed assuring us that they are here to stay and committed to the Australian market. This includes a dedicated Australian based customer service team. I’m also looking forward to catching up with a member of the Ypsomed team visiting Perth this week.

At the end of the day, more choice for people with diabetes is always a good thing. A massive thank you to Ypsomed Australia for having people with diabetes there.

Disclosures: Ypsomed Australia covered my travel and accommodation expenses to attend the launch event in Sydney. I was fed and watered across the duration of the event. I also received a YpsoPump and consumables to take home and trial. There was no expectation that I would blog about Ypsomed or the YpsoPump. My opinions and my time, including the annual leave I took from work to attend, 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.