Technology

Christmas Day, For a Person With Diabetes

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Imagine one massive room, that you could wander around at your leisure. A room that had all of the latest and greatest diabetes tools and technologies on show. A place big enough that you were free to go and chat with any of the exhibitors that you wish to approach, without having sales reps from competing companies clamouring all over you. An opportunity for you to actually hold a blood glucose meter in your hand, have a play with an insulin pump, and ask all of the questions that have been sitting on your mind for the last few months.

There might even be a few coffee bars with complimentary chocolates on the counter to help get you through such a massive day. Ideally, there might even be a few freebies such as a new blood glucose meter, a mug or a sample of glucose tablets to take home. But above all, you have the opportunity to really learn and get excited about all of the options available on the market to support you in the self management of your diabetes.

This is actually a reality for healthcare professionals, researchers and people working in the diabetes industry. I’ve been lucky enough to experience what I can only describe as Christmas Day for a person with diabetes through my attendance at the Australasian Diabetes Congress over the past two years.

Several weeks ago over a coffee with one of the players in the diabetes space, I was asked what I would like to see more of from their brand. My answer was simple. More direct to consumer initiatives like the ones that I’ve been lucky enough to be involved in as a diabetes blogger.

One good example of such initiative is Abbott’s FreeStyle Libre group set up sessions. To my knowledge, people with diabetes are invited to attend a group session with both a diabetes educator and an Abbott representative. They are provided with a complimentary FreeStyle Libre reader and sensor, and learn how to use the product during the session (depending on the place of setup, CDEs may charge for the session).

Both Diabetes Victoria and Diabetes NSW have held large diabetes expos in the past. While I don’t know a lot about the nature of these events, I believe that these are weekend events held in Convention Centres with a combination of exhibitors and information sessions.

Another personal highlight for me was the technology night designed by my fellow Young Adult Diabetes Committee members in Perth last year. The evening brought together representatives from Abbott FreeStyle, Roche, Cellnovo, AMSL and Medtronic Diabetes. There were also a selection of the Committee’s favourite diabetes accessories on sale.

Most importantly, the evening was designed by people with diabetes, for people with diabetes. There were Committee members speaking about their own personal experiences with such technology, as well as healthcare professionals explaining how the technology works. Seeing people in attendance who were only hearing about such technologies for the first time really highlighted the importance of holding events like these.

I get that there are regulations around the direct ‘marketing’ of pharmaceuticals to consumers. I have been told that the pharmaceutical players in this space are free to support any events that are initiated by third parties, but there are restrictions on events initiated in house. In fairness, I don’t want to see events where diabetes sales representatives are smothering innocent consumers who may be unable to see through the heavy spin.

However, the reality is that not enough consumers know about all of the available options on the market to manage their diabetes. Would it not be in the best interests of pharmaceuticals to be able to reach the actual users of their products in the same way that they can reach healthcare professionals?

There was a time before this blog existed where I didn’t really know a lot about diabetes and the options available. It took me five years until I moved on from the blood glucose meter that I was given on diagnosis, having learned about something more modern and better suited to my needs. There was a time where I never would have dreamed that I would be a candidate for an insulin pump, because I thought they were only for kids or people who were really struggling to manage their diabetes.

As I follow Tweets from the European EASD conference happening in Berlin this week, I am reminded of just how lightening fast these advancements in the treatment of diabetes are happening these days.

It doesn’t necessarily mean that newer or more ‘tech-ier’ will be better, but people with diabetes have a right to know and make an informed decision that best suits their needs. I try to share as much of what I learn here on my blog, not because I am in the pockets of big pharma, but because getting that information out there is a mission which I truly believe in.

I distinctly remember emphasising the importance of healthcare professionals relaying word of these new technologies back to people with diabetes throughout this year’s Congress. Equally, I know that there are many person centred healthcare professionals who will do just that.

People with diabetes have a right to know about all of the options out there.

We need more opportunities like these.

Dressing for Diabetes

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Most of the time my insulin pump sits clipped safely inside the left pocket of my track pants, pyjama bottoms, jeans or shorts. I’m pretty grateful that pockets are the norm in most of the clothes that I purchase these days.

I’ve tried clipping my pump to my waistband, but to be honest it just doesn’t feel comfortable there. It’s harder to reach, more work to put back and easier to knock into things.

Most of the time, my insulin pump doesn’t bother me inside my left pocket.

Until I get dressed for work, and tuck my business shirt into my trousers.

Then, my insulin pump definitely bothers me.

I don’t particularly like seeing my pump line protruding from my waistline all the way to my left pocket. I don’t enjoy having to rein my line back in through the day as it comes loose from constant movement. I hate having to navigate my iPhone around my pump line every time that I dive into my left pocket to reach for it.

The other morning as I was getting dressed for work, I could really feel the frustration.

In a moment of diabetes randomness, I pulled my insulin pump band out from inside my diabetes junk drawer. I pulled the blue band over my head and shoulders, pulled my arms over and settled it low around my waist until it finally started to feel comfy.

I grabbed my pump and concealed it inside the pockets of my blue waistband, shuffling it around on my waist trying to find somewhat of a comfy spot. I finally settled just past my left hip, heading closer towards my back. After a bit of fidgeting, I tucked my shirt in and it didn’t feel all that bad.

An hour later I was at work, moving around. I could feel my pump band shifting away from my comfy low zone and slowly creeping up my waist. I could feel myself going low, instantly regretting the 1 unit I had given myself for the eggs I’d eaten for breakfast.

As I walked back to my desk and popped open my jar of glucose tabs, I remembered exactly why I’d never done this before. As I instinctively reached for my pump to check how much insulin I had on board, I was reminded why I liked having my pump clipped in my left pocket rather than anywhere else.

Some days I glance at my pump in the mirror while getting dressed and feel so comfortable having it there to help better manage my blood sugars for me.

Other days I feel dirty, weighted down and different for having it there.

The size of diabetes devices really do make a difference to my mindset and quality of my life.

For the time being, it’s just something that I’ll have to learn to live with.

Day 3 at the Australasian Diabetes Congress

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Day 3 at the Australasian Diabetes Congress kicked off today with breakfast at the Adelaide Central Markets. I was absolutely flattered that Renza sacrificed participating in the 6.45am Novo Nordisk Fun Run to join myself, Ashley and Bionic Wookiee David for the best brekky in Adelaide! 

Class convened at 9am with a symposium on diabetes technology that, quite frankly, could have gone on for hours. Diabetes Australia CEO Greg Johnson was first up onto the stage to share an update on diabetes technology, much of which I had already heard at Abbott’s DX2Sydney event back in May. 

Diabetes Australia advocated for CGM funding for high risk and high need groups, with no age limits. Advocacy had also focussed on co-payments, as has been the case with insulin pump consumables and test strips. The federal government’s announcement of fully subsidised CGM was a complete surprise and will make advocacy more complicated going forward. 

Over 9,000 people have taken up CGM since the federal government’s full subsidy launched in April 2017. I also felt slightly patriotic as Professor Johnson highlighted that our NDSS should be the universal access pathway for diabetes technologies. 

There is also a product tender of syringes, test strips and urine ketone strips currently listed on the NDSS. It is expected that lower volume items will be removed to reduce costs, with an expected implementation date of December 1. 

We are also still waiting on an outcome on the subsidy (not reimbursement!) of Flash Glucose Monitoring. A public health consultation commenced in July 2017. Despite many healthcare professionals spreading Chinese whispers that the FreeStyle Libre will be subsidised soon, a final decision rests with the department of health. This really is anyone’s guess! 

Jane Speight of the Australian Centre for Behavioural Research in Diabetes took to the stage next to present some of the research into the psychosocial issues around Diabetes technology. My takeaways were that the tech is only as beneficial as the commitment from the person using it. The studies also prove that technology won’t be for everyone. It all comes down to individual choice.

Sue Wyatt rounded out our session, pursuing the topic of how well we have closed the loop. Although not made clear, the research presented referred to clinical trials in Medtronic’s 670G hybrid closed loop system only. 

Closed loop systems automatically adjust basal insulin based on CGM readings in order to regulate blood glucose levels. The system had a blood glucose target of 6.6mmol, with a target of 8.3mmol set during exercise. This is disappointing, and I know for a fact that these targets wouldn’t be suitable for many people with diabetes. 

However, I completely get that this blood glucose target may help to get a hybrid closed loop system as such approved for use sooner. I also expect there’s a commercial motivation for this as well, with the ability to sell an upgraded or enhanced hybrid system down the line. 

The major benefit of Medtronic’s 670G was seen in overnight blood glucose levels. Interestingly, we were told that this 6 month study was only in its infancy. It leaves a lot to be said about the timing of approval for Medtronic’s 670G system (the 670G pump has been approved, the 670G compatible CGM sensors are yet to receive approval).

Congratulations to Amy Rush of the Telethon Type 1 Diabetes Family Centre, who was awarded Credentialed Diabetes Educator of the year. Go, WA! 

I was also delighted to hear that SA based CDE Jayne Lehman was also awarded an honorary life membership to the Australian Diabetes Educators Association (ADEA). Well done, Jayne! 

The day rounded out with a debate on whether diabetes technology was helpful or harmful. This was a complete letdown, given that people with diabetes were on the affirmative side and people without diabetes were on the negative side. Without technology, we’d all be living in caves!

I would like to extend a massive thank you to Diabetes Australia for inviting me to be part of the ‘Peoples Voice’ team once again this year. While they covered my travel, accommodation and registration costs to attend the Congress, they did not pay for my opinions or my time. While I certainly don’t claim to represent anyone other than myself, I hope that I have been able to bring a consumer voice to the Congress. 

My gratitude also extends to joint Congress hosts – the Australian Diabetes Educators Association (ADEA) and the Australian Diabetes Society (ADS) – for their support of Diabetes Australia’s ‘People’s Voice’ initiative. 

Finally, a massive thank you to my amazing tribe of people with diabetes that made my week so special. I feel so privileged to spend time in your company call you all friends.

It’s been an insanely busy week with long days and late nights attending product launches, networking and blogging. I haven’t even began to scratch the surface of the exciting developments that have come out of this week.

I’m homeward bound as we speak and look forward to sleeping in my own bed tonight, having a coffee machine at my disposal tomorrow morning, and spending my weekend recouperating.

Stay tuned.

Hope.

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I don’t really have a great deal of faith in a cure for diabetes. I do believe that we have lost sight of curing diabetes. While technology may be exciting (case in point), every new entry onto the market merely seems to be a pathway to the next product or upgraded system in the pipeline. There does not seem to be an end goal of eliminating the need for these devices altogether and curing diabetes. Perhaps people like me are to blame for feeding this diabetes technology frenzy.

Yesterday, I had the pleasure of attending Diabetes Research Western Australia’s Exploring Diabetes Expo to hear about some of the latest and greatest diabetes research being funded in WA.

Of course, the best thing about attending events like these is connecting with new and familiar faces in the diabetes community here in Perth. I met someone who was looking for answers to better manage his type 2 diabetes. I overheard a father talking about his newly diagnosed type 1 daughter, attending to try and get on top of it. It was also great to catch up with a few familiar faces.

Being surrounded by supporters of diabetes research and people in the scientific community, I was reminded of my time at the ADS-ADEA conference last year, where the company of people with diabetes is not the norm. I really felt that some of these people could benefit from spending more time in the company of people with diabetes.

The highlight of my morning was hearing Professor Tim Jones, head of Endocrinology at Perth Children’s Hospital, speak about closed loop systems. Despite all of the advances in technology, blood glucose control hasn’t improved in the last five to ten years and only 20% of patients are meeting blood glucose targets.

My heart sank hearing Professor Jones tell the audience that reason for this is that type 1 diabetes is simply a hard condition to manage.

I have no doubt that type 1 diabetes is a difficult condition to manage. But equally, I feel that clinics are under resourced and people fall through the cracks, unable to reach their full potential. One fabulous person with diabetes in attendance lamented her frustration at having to hear about new technologies through peers, rather than her healthcare professionals. Another friend in attendance lamented that the public system has little to be desired with it’s very long waiting periods.

The morning also introduced us to some awesome Artificial Intelligence retinopathy screening, which I’m not quite sure differed too much from that of an Ophthalmologist or even an Optometry screening.

There were also sugar free cupcakes, a coffee van and a great view of Lake Monger on a glorious Winter day.

Admittedly, diabetes research is not something that I can get excited about. Not like I do with the tech. But if there is one person that gives me hope in a cure for diabetes, it is Sherl Westlund, director of Diabetes Research WA. Sherl’s passion for the research grants her organisation provides gives me a glimmer of hope that we will find a cure for diabetes, hopefully in my lifetime.

If there’s one thing that I really do need, it’s hope.

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.