The diabetes online community is a truly global network. We see that every week in tweetchats and anytime we log onto social media. We know that connections are made that are life changing and, (as in the case of my dear friend’s ‘Pumpless in Vienna’ story – to be told here soon), life saving.

For the last three years, I have been privileged to attend the European Bloggers Summit, which is a satellite event run alongside the EASD Scientific Meeting. This event is a chance to really look at ways that consumer advocates can work together and support each other to make significant change to living with diabetes.

It was sobering to be reminded several times yesterday that those of us sitting behind our laptops, participating in the dialogue of the community are already very lucky. We looked at programs out there that are providing insulin to people who would not otherwise have access. Again – life saving.

The beauty of these events is that they are not simply a day or two of navel gazing and patting ourselves on the back for the work we do. We challenge ourselves and each other to do more, do better and reach more people. We plan for what we want to achieve and then hold ourselves accountable for what we have said we want to deliver.

The issues that we have in Australia and that I frequently write about right here are so often universal. Hearing friends from Europe say that the language of diabetes is an issue, or access to technology or medicines is prohibitive for some, reminds me that it is worth continuing to be in this space. When I hear about the frustrations experienced by others when it comes to consumer representation, I know that every time I say ‘nothing about me without me’ it is echoed around the world.

There are some amazing things going on, and over the coming weeks I’m going to write about some of the things I learnt about because I not only want to share this work, I also want to encourage others to get involved.

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DISCLAIMER

The 2015 European Bloggers Summit was sponsored by Johnson & Johnson. I was invited by Johnson & Johnson to attend the event and did not receive any funds from Johnson & Johnson to cover travel or accommodation costs to Vienna or to attend the EASD conference. These costs were covered by my employer, Diabetes Australia – Vic.

Yesterday, I sat in meetings, listened to talks and attended press briefings. The EASD conference is shaping up to be a very busy one and I am doing my best to get to as many things as I can whilst still making sure I get to catch up with as many online community people as possible.

And thank goodness for those people; for the people I’ve seen in person at the conference and for being able to sit in for a very short while on this week’s OzDOC tweetchat.

These conferences are critically important for a number of reasons. They bring together the biggest and brightest people who are most admirably working to improve the lives of people living with diabetes. These are minds far smarted than mine – they are amazingly brilliant professionals. I admire them on many, many levels.

But too often I get the feeling that people with diabetes are lost in the messaging and completely forgotten. The language being used has us as passive ‘subjects’ (thank you to Professor Richard Holt (@RichardGHolt) for your tweet, by the way!), not involved in what’s going on. It’s kind of like these conferences are a magical land where diabetes is spoken about as a thing on its own, forgetting that it is always attached to actual real people living actual real lives in the actual real world.

One meeting I sat in today listed ‘key stakeholders’ involved in a new ‘patient’ education program. The glaring omission in this esteemed list was people with diabetes.

In another session, the speaker was complaining about the inability to get accurate data from device companies about ‘patient opinion’ of their products. There seemed to be a complete lack of thought that perhaps people using those devices might be able to provide the information being sought.

In both sessions, I thought about standing up and saying something, but you know what? Sometimes I get sick of the sound of my own voice saying the same things over and over.

This is not where I say that people with diabetes need a seat at the table of organising committees and advisory boards. Because I say that all the time.

No.

This is where I remember that it is up to us to cut through the noise, ignore the fanfare and the superfluous crap (of which there is much) and try to find the things that are actually going to make life with diabetes a little – just a little – bit easier. It’s there – it’s being spoken about and there are glossy brochures promoting it.

It’s just that the wrong people are being spoken to.

Update from yesterday’s post

I got up close and personal with the new Abbott FreeStyle Libre system today, getting to see it in action on a representative from Abbott. Despite begging, pleading and promising to not tell anyone (except, of course, the pretend people who read this blog), I was unable to get any details about an Australian release date. Social media musings, however, suggest that we are looking at early next year. Watch this space!

New technology gets me very, very excited so it was with great interest that I sat through the Abbott symposium showcasing their new FreeStyle Libre glucose monitoring device. Two and a half hours later and I was desperate to get my hands on one of these new devices.

Abbott call this their ‘flash glucose monitoring system’. It’s not continuous glucose monitoring as we know it. There is no integration between pump and sensor device. This is different.

Click here to read about how this device works, but basically, there is a sensor worn under the skin (positioned on the upper arm). The sensor, a white little disc, is about the size of a twenty-cent coin. A ‘reader’ is scanned over the sensor to give a glucose reading. That’s it. And there is no calibration required. The sensor lasts 14 days and Abbott says that this system eliminates the need to do finger prick tests.

That’s right – no more jabbing a lancet into your fingers. No more inserting a strip into a device, taking a blood sample, wiping it on the strip and waiting five seconds for the meter to count down and give you your number. Instead, just a swipe of the reader for an immediate result.

I should point out that the reader does also double as a BGL and ketone meter. At the symposium, it was mentioned that a finger prick test is recommended during periods of high variability.

Okay – so that’s all the good stuff. But I do have a couple of concerns.

First up, let’s talk about how it looks. (Yep, this is where I am being shallow.) There is no doubt that the sensor in this system is small. In fact, it has a tiny profile – only millimeters high. However, it is white and noticeable and has to be worn on the upper arm. I know that if I were wearing it, I’d be spending a lot of time explaining what the little white disc stuck to my arm is all about, and that would start to annoy me pretty quickly. I didn’t get a chance to ask why it couldn’t be worn elsewhere, but plan do to that when I visit the Abbott stand during the conference.

The cost of this device is yet to be announced in Australia. In Europe, the sensors will be around the €60, which, using today’s exchange rate, equals about AUD$86. This is not affordable tech. This is not going to be within the reach of most people. And that means, that once again, we have a situation where people with diabetes don’t have access to the latest, most convenient technology.

Also yet to be announced is the release date for the Libre in Australia – again this is something that I will be asking about later this week, however I suspect that the team here won’t be able to give me much idea about that. I might need to wait until I get home to get a better idea of when it will be available for Aussies. I do want to point out that the Abbott EU team should be commended in having given a sneak preview of the device to a significant number of peer leaders. How fantastic to have people with diabetes talking about this – and talking about the real experience of using the device – rather than us having to rely solely on the glossy collateral and impressions of HCPs.

But despite any concerns, make no mistake – this is a game changer. This tech has the potential to redefine self-monitoring in ways that we’ve not seen yet. For me, the benefit of not having to prick my finger to check my BGL is a huge, huge bonus and I know that there are many people who find this the thing they hate most about diabetes management.

This is exciting. I want it, and, at the risk of sounding like Veruca Salt, I want it now!

DISCLAIMER

The symposium I attended was sponsored by Abbott. I was not paid to attend the Symposium nor to write about this product. Abbott has not supplied me with any products in the FreeStyle Libre range. This blog post is just my impressions based on what I heard at the Symposium I attended and from people with diabetes who have been using the device. 

I sat in the Qantas Club Lounge fighting back tears as the kiddo sent me text messages saying she would miss me. There were tears when I left, but my mum assured me that she was okay within about five minutes. (There’s a double-edged sword for you – happy that she is okay, but, dammit, couldn’t she be upset a little longer?)

I was hoping to drown the sadness of three weeks without my little girl with the excessive food and booze on offer in the lounge, but a stupid BGL of 17.3mmol/l (hello stress) saw me nibble on some nuts, drink half a glass of sparkling wine and avoid the dessert table. Missed opportunity.

By the time I boarded, my CGM was showing a much nicer number and I settled in for the long flight. As usual, I was asleep before we took off and managed to get in five hours of sleep, waking only because my pump was vibrating. (At that point, I felt I needed to explain to the person next to me why the little box in my top was vibrating and what it was for and I have diabetes and it’s telling me that my blood sugar is above it’s high limit because I’m stressed when I’m in transit and I miss my nine year old daughter and I wonder when the wine cart will be around.)

I am not afraid of flying – never have been. But I loath being in transit. It stresses me out and that sends my BGLs soaring. I bolused a little and upped my basal rate a touch.

When food arrived, I took two mouthfuls of the chicken-rice-vegetable combination that seems to make up pretty much every airline meal and held on to the chocolate bar. My CGM graph was pretty stable for the remainder of the first leg.

At Dubai airport, I set of every alarm possible going through security and was escorted to a private room to be patted down by a female attendant.

‘I’m wearing two medical devices – one here (I patted my chest) and one here (this time, I patted my abdomen where my CGM is inserted). I can show you if you’d like.’

After playing diabetes show and tell, I collected my things and moved through the airport, finding somewhere to have a coffee and regroup before the final flight. (And avoid accidentally buying a Hermes bangle.)

A two hour lay-over and I boarded the plane for Vienna. Thirty minutes in and off went my alarm warning me that my BGL was dropping too fast. I treated the impending low and fell asleep for a couple of hours, waking for a meal (another two mouthfuls!) and rounded out the flight with a couple of movies.

Checking into the hotel, I realised it had been 26 hours in transit door to door.

Travelling with diabetes has it’s challenges. I never travel now without wearing CGM because I like being able to pull out my pump and see how I am tracking. I love that I can respond to arrows before the number becomes problematic. This is, of course, the beauty of CGM all the time, but being able to stop having to deal with a nasty hypo while cruising at 35,000 feet in a cramped space is convenient beyond belief. Equally, being warned about the ‘about-to-happen-in-transit-stress-highs’ before they become horrid, socks on teeth, needing to wee every five minutes hypers is fabulous – for me and the person I’d be climbing over to get to the loo!

So, now, I’m in Vienna. The first strudel and schnitzel have been consumed. I’m jet lagged beyond belief. But my BGLs are over their in-transit-stress. Everything is how it should be and I’m ready for EASD!

This morning when I checked Facebook I saw this:

Yaniger save the pancreas

 

Derek Yaniger is one of my favourite artists. The walls in our living room are covered in his quirky work. I’ve no idea what his connection to diabetes is or why he painted this. I am going to write to him and hope to find out. And I am going to try to get myself a copy of this and hang it somewhere

In related news, I walked into my office today and found this:

Julia painting

My very talented team-mate Julia painted this beautiful and calming piece for me to hang on the far-too white wall in my office. I am so lucky I’ll be looking at this every day I am at work.

Also in my office is this gorgeous work that won a competition we held a few years ago. It was done by a young girl with diabetes and I love how clever she has been incorporating ‘diabetes waste’ into the piece.

Hope artwork

And finally, next week, I’m in Vienna and at some point, in between the conferencing and meetings and strudel-eating and schnitzel-eating, I will find my way to the Belveder museum to see Klimt’s The Kiss.

klimt_kiss

Diabetes Art Day may not be until February, but between now and then there are lots of opportunities to look at beautiful works of art – diabetes-related and not.

It’s Friday. Of course, Billy Joel’s Vienna was the only choice for today.

 

Look! Uniforms for the Diabetes Online Community!

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Aussies woke this morning to the news that Apple has launched a smart watch. And I’m a little excited.

iWant

iWant

Waking nice and early so I could read all the buzz about Apple’s latest launch and find out if the rumours about the new iPhone were true, I logged on to my iDevice and started reading. All the hype (I just typed hypo there….), all the photos, all the information.

I skimmed over the details of the new iPhone 6 and iPhone 6 Plus (which I will not under any circumstances be referring to as a Phablet), reading about the snazzy new camera and the high-tech, bigger and thinner features. But that wasn’t what I was really interested in. There was something else I was hoping to see. And there it was. The ‘one more thing’. The Apple watch.

Firstly, let me get my shallowness out of the way and admit that the initial thing I wanted to know was how it looked. Would it be something that I wanted to wear on my wrist? The answer is abso-freaking-lutely! And with seemingly a billion ways to customise, there is sure to be something that suits everyone. (Obviously, I’m hoping for a stripy band.)

The thing that is of particular interest to me is how I will be able to use the watch to help manage my diabetes. At this stage, I’m not sure that it is particularly revolutionary here.

This is Apple’s first venture into the smart watch market and as a first generation device, it won’t do everything that I would truly love a smart watch to do. As a health tracker, it will currently monitor blood pressure, heart rate and, through whichever app you choose, can be used as an activity tracker.

The dream device, of course, would incorporate some sort of non-invasive, real-time glucose sensor. We’re not there yet. But in a couple of years, I certainly hope that this will be part of the smart watch suite of applications. (Of course, with a cure a mere five years away, this technology will never be needed.)

Call it a gimmick if you’d like, or get on the Apple-bashing bandwagon (there are heaps of people on there already!). But wearable technology like this is going to be how we track, collate and communicate our medical information. People with diabetes are already used to wearing our tech – many of us have insulin pumps hanging from our bodies, tucked away, and glucose sensors taped to our skin. This is already how we roll. Some of us currently use apps on our phones to track our BGLs and keep records.

This is the next step in streamlining our information and data gathering. It’s exciting. It has the potential now (and future generations even more so) to make our lives with diabetes easier. This is all good news.

Plus…it comes in rose gold!

Last week, there was a very interesting infographic doing the rounds on social media sites about where people donate as compared with the diseases that kill us.

It looks like this:

Where we donate

As you can see, diabetes is credited with causing the third most deaths, yet it accounts for relatively little money raised.

Firstly, this isn’t a game of ‘my health condition is worse than yours’. As someone most eloquently wrote on a Facebook status the other day: ‘all diseases suck’. Equally, every single condition is worthy of people’s donations. There simply isn’t enough money to go around to do the research, run the programs and assist people dealing with whatever health condition they have.

But I think unpacking why some conditions attract more donations than others is worthwhile.

Despite being responsible for many, many deaths and affecting millions of people both here in Australia and around the world, diabetes just doesn’t seem to be the ‘disease of choice’ when people reach into their wallets to make a donation.

Why is this? Why is diabetes not at the top of people’s minds when they want to do some good?

I’m just going to say this.

Diabetes isn’t sexy. It’s really not. It’s chronic; there’s no cure; and while there is the cute factor when we’re talking about little kids with type 1 diabetes, they grow up. And then it’s just boring adults with boring diabetes.

But there’s more than that.

The media does a great job of stigmatising this condition. Plus, there’s the ‘you did this to yourself’ misconception that means it’s okay to blame people for developing (type 2) diabetes in the first place and ‘…why the hell should I donate to you. Get off the couch and go for a walk’. Helpful. Really, really helpful.

Diabetes needs a makeover. Plain and simple. We need people in the general community to change the way that they currently think about diabetes so when it’s time for a little generosity, they consider making a donation to diabetes research or consumer organisations.

The neat little packages we seem to have about diabetes are misleading. Tying up type 1 with kids means that adults with type 1 have no voice at all. Blaming all people with type 2 diabetes for ‘doing this to themselves’ completely forgets the facts that genes play a significant role in developing type 2 diabetes. Calling diabetes ‘a touch of sugar’ ignores the seriousness of everyday life with diabetes. In fact, the very idea that this is all about eating sugar results in such misunderstanding about diabetes that people think the solution is as simple as not eating cake. The misconception that insulin is a cure ignores the multitude of factors that are involved with the daily management of this condition. And by thinking it is just about sticking needles into our bodies negates the distress and anxiety life with diabetes can bring.

I don’t know what the answer is. But I do know that what we’re doing at the moment isn’t working. Our messaging is wrong.  How do we get it right?

On Saturday, I head to Vienna for this year’s EASD conference. Yesterday, my aunt asked me if I was packed and ready to go. ‘Ha!’ I laughed. ‘Of course not! I’ll do that an hour before I need to leave for the airport. I don’t even know where we have a suitcase at home.’  I am not an organised traveller by any stretch of the imagination, and generally have the philosophy that if I forget something, I’ll buy it when I get there. (Actually, I secretly hope I’ve forgotten things like shoes and bags so I NEED to buy them when I get there….)

This ad hoc attitude generally works. Except, of course, when it comes to all the diabetes things.

I feel like I’ve got everything under control. Until I list all the little things I need to do, need to buy, need to find, need to organise. It’s nothing major; nothing big. No; it’s the little things. And they add up!

I need:

    • Insulin…(do I even have a current prescription? Call the pharmacy and check);
    • pump lines and reservoirs;
    • BGL strips;
    • to organise my loan pump;
    • to order sensors;
    • to check my travel insurance;
    • to locate a spare meter. Surely I can find a working one (without a flat battery) in the myriad spares at home or in my desk;
    • to find my letter from my endo;
    • to locate (and wear!) my medic-alert bracelet;
    • to buy hypo supplies for the plane;
    • my Frio pack…(just realised I’ve not seen it since we moved at the end of last year);
    • spare batteries for my pump…(especially urgent after getting a battery alarm this morning);
    • syringes;
    • back-up long-acting insulin…(do I have any in-date long-acting insulin in the fridge?)
    • to get a manicure and pedicure. (Okay, not strictly diabetes related, but I’ll be using this as my check list. If it’s on here, it has to be done!)

The clothes and shoes and everything else that those with functioning beta cells need to pack can indeed wait for an hour before the taxi arrives. But all the diabetes things need to be organised and sorted and planned. Five days; that’s heaps of time. And I just booked in my manicure for Friday. Organised! 

 

As always, the internet is a trove of …well, cat pictures, naked photos of celebrities and silly cures for diabetes. But there is also some other stuff. You’ve just gotta look.

A Case for Action

As mentioned, I was in Canberra on Wednesday for the launch of a new Diabetes Australia report on insulin pump therapy.  You can read Insulin Pump Therapy; A Case for Action here.

ADEA Video wrap-up

The people from online magazine Diabetes Educators Update have put together a short video wrap up of last week’s ADS-ADEA conference. It was nice to be asked about whether HCPs need to consider the consumer perspective.

Try to overlook the questionable language – (diabetes sufferers’???) – I’ll be sending them a copy of the DA Language Position Statement soon.

Use words wisely

While we’re talking language, this tweet from Kim at www.txtingmypancreas.com really resonated:

Language tweet

It’s why I don’t say I’m ‘battling’ diabetes. I’m living with it. We co-exist (not always happily). There is no fighting; there is just learning to get along.

On yer bike!

Have you been following Team BG doing the mHealth Grand Tour? They have been making their way from Barcelona to Vienna. On bikes. Because they’re slightly crazy. The photos are gorgeous and I have to admit I’m a little in awe of their sportiness. Go team! I’ll see you in Vienna.

Let it go ON!

We need to talk about Frozen because pretty much everyone else on the DOC has been. This week in the US, a documentary about the making of Frozen was screened. As it turns out executive producer John Lasseter based much of the character of Queen Elsa on his kid with type 1 diabetes. I love this character for so many reasons and now, I have another one. I’m not sure that we’ve had many ‘Let it Go’ free days in our house since we first saw the film, and now I don’t care if it’s played every single day for the rest of my life! Here’s what John Lassiter had to say:

Not our turn

‘We need an ice bucket challenge for diabetes’. I’ve heard this said so many times over the last few weeks from people affected by diabetes. It’s not a sentiment I share, because this particular social media-driven stunt doesn’t belong to us.  Moira McCarthy has a daughter with type 1 diabetes and wrote this incredibly eloquent piece about how the diabetes community should be able to celebrate this for the ALS/MND community.

Moira wrote in the piece that her daughter with type 1 asked this question: “Why can’t our community be thankful another community is having success? Why isn’t that enough?”

Our turn will come. But for now, I think we should step back, support this community and this campaign however we see fit and be pleased for their success. (For the record, you can just donate – you don’t need to pour ice over your head; it’s bloody freezing still in Melbourne!).

MedX

The Medicine X (MedX) Conference for 2014 has kicked off at Stanford University. This conference is all about the future of medicine and healthcare and there is considerable consumer (patient) involvement. There are some familiar faces in the speakers’ gallery. Follow along on Twitter here.

Noodle

We have a new puppy. And she is the cutest thing ever!

Noodle

Happy Friday! It’s Fathers’ Day on Sunday. This is for the three men for whom I get to celebrate this day.

 

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