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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.

AccuChek, MySugr and Eversense at the Diabetes Congress

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At the Diabetes Congress last month, I had the pleasure of reconnecting with the team at Roche Diabetes Care, whose stand had turned a noticeable shade of green. But more on that in a moment…

The AccuChek Guide is currently my blood glucose meter of choice, and for good reason. Not only is it a meter that I can trust, but it’s also a modern one that’s designed for the 21st century. One of my favourite features is its Bluetooth, which wirelessly transmits blood glucose readings to the Accu Chek Connect smartphone app for instant review.

My biggest gripe about most diabetes smartphone apps are their lack of bolus calculators. I can personally see no benefit in logging things like insulin doses or carbohydrates without the essential ingredient that delivers value to me: a bolus calculator.

Despite using an insulin pump, I have found myself in need of a good bolus calculator several times over the past two and a half years. I’ve taken three breaks from my insulin pump during that time, in addition to also using the YpsoPump which does not have a built in bolus calculator itself.

The bolus calculator contained within the AccuChek Connect app has been disabled for over 18 months now, due to a bug that was over estimating insulin doses. I’ve put out calls for help on Twitter and Googled in search of any hacks with very little luck. I’ve been waiting patiently for an update that is yet to surface.

While the Connect app is still available to use, I was told that there are no plans to resurrect the bolus calculator anytime soon, with Roche now focussing their efforts on MySugr.

MySugr is basically a diabetes logbook app with the aim of ‘making diabetes suck less.’ Hence all the green in the stand. I have not personally used it, but I do hear it is quite fun and motivating to use.

The AccuChek Guide will wirelessly transmit blood glucose readings into the MySugr app. I was also pleased to hear that an extension of a bolus calculator to the app is awaiting regulatory approval. Fingers crossed!

Despite Roche’s exit from the insulin pump market in the US last year, AccuChek insulin pumps are still being manufactured in Europe and I have still been reading headlines about new developments in the pipeline. Roche insulin pumps don’t appear to be a popular choice among Aussies, and I did wonder if the lack of insulin pumps on display was a reflection of this or a lack of confidence in their product. Or perhaps I simply didn’t see the pumps on display…

More excitingly, I have heard that Roche has plans in the pipeline to distribute the Eversense implantable CGM system in Australia. I don’t know much more than this, and the system will of course need to receive regulatory approval first. You can have a read of this guest blogger’s review from Europe over at Diabetes Strong.

While Roche may not be the most well known for insulin pumping or CGM systems, they are clearly leading the way in blood glucose monitoring. Given that most people manage their diabetes using standard blood glucose monitoring, that’s not exactly a bad thing.

More enhancements and innovations that will support people in their chosen therapy is always a good thing.

And a cool new coffee mug. Because more excuses for coffee is also a good thing.

Disclosure: Diabetes Australia covered my travel, accommodation and registration costs to attend the Australasian Diabetes Congress. These are my own views, and not those of Diabetes Australia. My time, including the annual leave I took from work to attend, was my own. 

Addressing ‘Non Adherence’

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The one issue that stuck out to me after the recent Diabetes Congress is the need for a resource to better support people in the self management of diabetes in hospitals and even health care. Diabetes Australia are already leading the way with some of their position statements advocating for positive communication, with the view that people with diabetes should be supported in their chosen decisions, even if some of those decisions are ‘off label.’

But we still have a long way to go.

Last week at Twice Diabetes, Melinda wrote about a session at the Congress where she learned about a hospital practice of discharging patients for ‘non adherence’ and not responding to follow up contact.

It was a stark contrast to another session I had attended which investigated rates of response to follow up contact, in this case for diabetes screenings in rural communities. This session was absolutely non judgemental, venturing into possible reasons for patients not responding to follow up contact and a genuine desire to find better solutions.

I think what’s really sad for me is that in case studies like those presented in Melinda’s session, the voice of the person with diabetes obviously isn’t being heard. I guess I get frustrated because while I know, and have the confidence to be my own advocate, not everyone is able to. This is where we need healthcare professionals who are on our side. People who are willing to put their feet into the shoes of someone with diabetes, think about why they may be ‘non adherent’ and come up with solutions.

From where I’m sitting, outcomes like these could be greatly improved through better communication when talking about and with people with diabetes. On the surface, it might appear that we’re just being nit-picky in our choice of words when we harp on about language, but it’s about so much more than that.

So how can people who are working with people with diabetes, foster better communication among people with diabetes? Here are a few humble suggestions…

1. Create a supportive environment that invites us to share. Listen to us. Don’t judge us. From everything I’ve heard about language and diabetes, there’s one little gem that always sticks out to me. The person with diabetes may be making a decision that is very rational to them. But when we are scolded, cut short or made to feel uncomfortable those reasons are likely to go unheard. We’re more likely to go off and do it without support.

2. Uphold our name. Treat us with the utmost respect, even in our absence. While we might be ‘diabetics’ or subjects of work, we are also people with real feelings and beating hearts. Hold me in the same regard that I have for my own family when you’re talking about us around others.

3. Empathise with me. Much like you, I have a life. A family. A job. Bills to pay. A roof to keep over my head. I’m trying to do all of this while managing an extremely demanding, costly and time consuming chronic condition that I didn’t ask for.

4. Treat me as Frank, and not as Frank’s diabetes. Shake my hand. Greet me by my first name. ask me how I am. How I really am. I don’t want to feel the power trip when walking into my doctor’s office. I want to feel like I am catching up with a colleague or even leaning on the shoulder of a friend. It’s as simple as being a decent human being.

I’m not too big to admit that I too am a flawed individual, with much room for improvement. I don’t know what it’s like to be a healthcare professional, a researcher or someone working in the industry.

But I have been lucky enough to meet many amazing healthcare professionals who have a real passion for their work and for creating better outcomes for people with diabetes. What makes these people real champions of people with diabetes is that they always hold a high regard for lived experience, and are always willing to learn. That’s all that I really ask for.

I am only a person living with diabetes, who wants better outcomes for other people with diabetes who might not be as confident or as privileged as I am to obtain those outcomes.

I don’t think that is a lot to ask.

Cellnovo on Show at the Diabetes Congress

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I had the pleasure of reconnecting with the Cellnovo team at the Australasian Diabetes Congress last month.

The Cellnovo insulin pump launched 12 months ago, with the availability of consumables on the NDSS eventually delayed by a month. The system consists of a small rechargeable pump that sticks to a velcro patch on the body, a very short line and an infusion set that sits within close proximity to the pump. The system is controlled wirelessly via a mobile handset. You can read more of my observations from last year’s launch here.

There were rumours circulating earlier this year around the system being unable to withstand the heat of the Australian summer. I was told that this issue was nothing more than a temperature sensor in the pump that alerted users when insulin was at risk of spoiling, such as during hot days at the beach (Tandem’s t:slim pump also contains an insulin thermometer). I believe that the system may have since been upgraded to address the uber-sensitivity of the alarms.

Last year Aaron Crook was the sole sales rep, travelling all over Australia where the demand took him. There are now several new additions to the team. I was pleased to meet a dedicated sales rep for Western Australia, who reminded me that we had met previously when she had worked for Roche (and shown me how to use the eject button on the AccuCheck Guide!)

Cellnovo will soon be rolling out a new handset to all of their customers. The upgrade features a larger screen than its predecessor, and is also much slimmer and sleeker to hold in my hands. I am told the primary reason for this upgrade is enhanced performance. The team are also in disagreement on its new colour scheme, which gets a thumbs up from me.

The upgrade has come at the expense of the test strip port that was built into the handset. For the Cellnovo customer who may not be too keen on attachment, the prospect of now having to carry a blood glucose meter may be a big deal.

For the time being, users will need to manually enter their blood glucose readings into the handset to use the bolus calculator. However I was told that the handset will soon be compatible with a variety of wireless blood glucose meters, meaning that readings will wirelessly transmit to the handset via Bluetooth.

I really like the idea of having a separate handset to control the pump. With the emerging integration of diabetes management into smartphone apps, phone performance and battery drain has definitely been very noticeable for me in recent months. It’s also good to know that I could leave my phone on my desk if I wish to.

Cellnovo may not sit in the ranks of Medtronic or Tandem, but they are clearly focussed on filling a gap in the insulin pumping market. There are many people who don’t wish to take up insulin pump therapy for the sake of attachment and pump lines and weight and complexity.

I feel that Cellnovo is the option that may get many to reconsider their feelings toward insulin pump therapy.

Disclosures: Diabetes Australia covered my travel, accommodation and registration costs to attend the Australasian Diabetes Congress. These are my own views, and not those of Diabetes Australia. My time, including the annual leave I took from work to attend, was my own.

The Diabetes Social Media Summit

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On the Tuesday prior to the Australasian Diabetes Congress, I was lucky enough to be a part of the Oz Diabetes Social Media Summit. Brought together by a company called Ascensia Diabetes Care, the afternoon brought together a group of Aussie diabetes bloggers in Adelaide. You can also check out Renza’s recap of the Summit at Diabetogenic, and also search for #OzDSMS on Twitter to see what was Tweeted through the day.

Prior to being invited to this event, I honestly didn’t know a lot about Ascensia. I knew that these guys were connected to the Contour blood glucose meters many Medtronic insulin pumpers use. The ones that wirelessly Bluetooth blood glucose readings to the pump.

I’ve also seen Ascensia pop up on Twitter over the past couple of months, and much to their credit it is a handle that I would actually want to follow. Their feed is definitely one of those ones that genuinely wants to be a part of the diabetes community, rather than constantly spruiking company culture. I genuinely got the same feel from the team who were present with us in the room (and I’m not just saying that because they supplied a coffee machine!).

Ascensia were formed from the sale of the Bayer Diabetes Care business, and their point of difference is that they’re only focussed on diabetes. Part of the reason for our convention was the launch of their Contour Next One wireless blood glucose meter, which apparently boasts the greatest level of accuracy on the market. Bionic Wookiee David Burren has written more about the meter here.

In a room full of privilege, it was really good to hear standard blood glucose monitoring being given the emphasis it deserved. CDE Cheryl Steele from Victoria presented to us on the importance of having an accurate device to calibrate a CGM, and Bionic Wookiee David is living proof of a backup plan!

Grumpy Pumper hit the nail on the head in highlighting that the majority of people with diabetes actually manage with blood glucose monitors and insulin pens. I still manage on finger pricks for about 50% of the time, and I certainly welcome innovation in blood glucose monitoring as well.

I was happy to hear Ascensia’s vision for interconnected diabetes management, rather than pushing one line or avenue of products. We were told that their aim is to be a calibration partner of choice for insulin pump and CGM systems, as well as having formed partnerships with several data management platforms such as Diasend. All of this gives us more choice in the technologies that we may wish to use around our blood glucose meter. More choice for people with diabetes is always a good thing.

During the afternoon, we also heard from special guest Grumpy Pumper from the UK. Despite the persona he portrays online, Grumps is honestly a really genuine guy. Diagnosed in 1994 with no internet or social media, Grumps was doing the best he could with the limited information he had at the time. His sentiments definitely resonated with me and others in the room, which really says something about how many people with diabetes there are still being left in the dark today.

Grumps also shared with us his movement around encouraging other people with diabetes to talk about diabetes complications. It started with a foot infection and a simple Tweet expressing that he wasn’t ashamed of his diabetes complications, assuming that he wasn’t the only one who had them. He has inspired people to open up about their diabetes complications through a hugely popular series of guest posts on his blog.

To be honest, I was a little quieter than normal during this event. Usually, you can just tell that I want to say something by reading the look on my face. But these conversations were bigger than issues we’ve tackled at previous diabetes events. There were questions left unanswered that I honestly don’t know how to tackle.

I am a really, really privileged person. I don’t represent all people with diabetes. If I’m being honest, I’ve been struggling lately with the idea that perhaps I’m not as ‘identifiable’ as I once was because of the privilege I have.

How do we get the level of engagement that was in that room at OzDSMS, outside the room? How do we make sure that every person with diabetes knows about all of the options available to them in managing their diabetes? As Grumps put it, how many people will actually know that there’s a new blood glucose meter on the market today?

Disclosures: Ascensia Diabetes Care hosted me at the Adelaide Convention Centre, before migrating us to Adelaide Oval for dinner, on the Tuesday prior to the Australasian Diabetes Congress. I was already in Adelaide as a guest of Diabetes Australia.

I was fed and watered across the duration of the afternoon and evening. I also received a goodie bag containing a Contour Next One meter, test strips, information packets and lancets that will likely last me a lifetime.

There was no expectation that I would blog about the event. My opinions and my time, including the annual leave I took from work to attend, are my own.