Today, Australia has a new National Diabetes Strategy. I would be lying to you if I said that I had read every single word of the document (but, hey, knock yourself out and have a read here). I have had a skim. Now, every part of this Strategy is important – of course it is – but today I want to highlight type 1 diabetes in the document.

A lot of the Strategy crosses the boundaries of all types of diabetes, for example in the priority groups such as ATSI peoples, CALD communities, and those living in rural and remote areas. Attention to complications screening, recommending mental health screening at diagnosis as well as including regular monitoring in the Annual Cycle of Care, including diabetes-specific education and training to hospital staff. Services for women with pre-existing (types 1 and 2) diabetes planning and during pregnancy are considered with particular emphasis on pre-pregnancy planning and access to expert education.

While this is understandable – and there are many similarities in the way that these issues are addressed – there does need to be attention to the complexities type 1 diabetes brings. (Equally, the complexities of type 2 need to be tackled!)

But how is type 1 addressed?

Firstly, yay for a concise and accurate definition of type 1 diabetes. In fact, these 50 or so words could be used by any media outlet next time they need to define the condition! Also, well done to Sussan Ley (and her advisors) at this morning’s media briefing for giving such an articulate and well-informed summary of the diabetes situation in Australia.

12246825_10153722947215789_6667088770494981066_nVery pleasingly, early diagnosis of diabetes is one of the key goals (Goal 2), and type 1 diabetes is given its own treatment, including potential areas for action and measures of this progress. The Strategy acknowledges that 20 % of people newly diagnosed with type 1 diabetes present to hospital in DKA. This needs to change. Better awareness and recognition of type 1 symptoms to improve early detection are flagged as potential action areas.

Type 1 diabetes in the school setting is mentioned, specifically looking at better supporting families, and children to participate fully and safely at school.

In the piece about transition from adolescent to adult healthcare settings, access to psychological services is emphasised.

Could there be more? Well, of course there could. Diabetes is such a huge issue; there can always be more. So, what would I like to see that hasn’t made the cut?

Well, I would have loved there to be something about diabetes technology, specifically around pathways for approval and access of emerging technologies, as well as sorting out issues with access to currently-available tech.

I would have loved for the early diagnosis topic to be broken down a little more. It’s an issue at all stages, but poses a particularly significant challenge for adults with type 1 who are often misdiagnosed based on their age. It can take a lot of time – and a long period of poor health – before they are correctly diagnosed and treated as necessary.

More attention to structured education programs (such as DAFNE and DESMOND) and their value. And how new programs, such as the valuable POSH program (addressing impaired hypo awareness), could be funded.

Breaking down the section on healthcare access for Australians in rural and remote areas and focus on particular problems faced by those with type 1 in those areas. Specialist diabetes care in these areas is minimal; type 1 specialist care is even harder to find

The same could be said when addressing the management and treatment of type 1 in hospital and aged care setting. Type 1-specific education is essential so we stop hearing people getting lousy treatment.

Of course, this is a high level document and the detail is simply not in there. No dollars have been allocated to the strategy. The devil is in the detail – and we just have to see how that plays out.

Finally, I’m not surprised to say that already the naysayers are out complaining about the Strategy. It’s the usual thing with the usual suspects complaining amongst each other and not offering any suggestions or looking at the positives. I wonder how many of the people complaining actively participated in the consultation stages of the development of the Strategy. I am just stating this here because really, it’s tiresome hearing the same complaints about the same issues. I have some concerns too but I am also willing to acknowledge this as a progress and a step in the right direction.

Happy World Diabetes Day to everyone for tomorrow. Shine a (blue) light on diabetes.

Panel at MedTech

Panel at MedTech

I’m in Sydney today for the MedTech conference (follow along at home #MedTech2015) and also swamped with the usual World Diabetes Day happenings. Which I love, because it is a chance to speak about diabetes more than usual.

On my flight up here today, I re-read some of the things I’ve previously written about World Diabetes Day – and, more broadly, Diabetes Awareness Month – and thought I’d revisit some of them today.

Like this from the first year of writing Diabetogenic. (Contains lightsabers.)

And this, where I admit to wearing blue mascara, but thankfully the photographic evidence is poor!

This post tells of a crazy 2 days which kicked off with research awards, moved on to a very early morning flight to Sydney so I could do some diabetes myth-busting on a morning television show and ended with me participating in a 24 hour tweet chat. With lots more in between!

With so many different World <insert cause here> Days, explaining why we need one for diabetes (or anything else) can be tough. But here, I justified the need, sharing my own story of a hypo that wouldn’t quit and the advocacy that came after it.

And one of the proudest mum moments I’ve had is in this post when I wrote about how our daughter became my favourite diabetes advocate with her impromptu awareness raising activities at school on World Diabetes Day.

It’s always a busy, blue-tinged time.

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I speak a lot about the challenges of living with diabetes. Sometimes, the challenges don’t directly relate to me, but I can still see and understand that the diabetes experience is different to anyone and one person’s easy-peasy-lemon-squeezy is another person’s anxiety- and stress-inducing concern.

One of the things that perplexes and annoys me is people who are unable to see diabetes outside of their own bubble. Frequently these people fail to see that just because they don’t need information about <insert topic here> that doesn’t mean everyone has access to or an understanding of it.

Sometimes, when we are running an activity or speaking about a topic at one of our events, people say that they have never had any problems with that, so why would we speak about it – completely ignoring the fact that we have surveyed lots of people living with diabetes and this is one issue that is of concern to many others.

I ‘work in diabetes’ (which sounds ridiculous, but you know what I mean) and the last person’s diabetes that gets considered when I am at work and we are developing programs is my own. If I thought, for one minute, that my experience of living with diabetes mirrors most others, then I’d be utterly naïve and not doing my job. That’s why working and engaging with, and listening to as wide a range of people affected by diabetes as possible is critical to delivering services that are of use.

(Because, let’s be honest, if it really were all about me, I’d spend lots of time and effort working with the leather crafters at Hermes to help me design a perfect diabetes bag. Because: shallow. And lots of stuff.)

And you know if you just rolled your eyes at that last comment because you have found (or designed) the perfect bag and think it is waste of time to speak about it because it doesn’t affect you, then a) stop it and b) can you tell me where to get one? Thanks.

With World Diabetes Day this week, it’s a great time to think about how others deal with diabetes, what they know, what they don’t, what their concerns may be.

If I only cared about what was going on in my diabetes bubble, I wouldn’t write so much about campaigns like #Insulin4All. You can read all about the campaign here, and my post about it during the lead up to last year’s WDD. And watch this video!

I have never had trouble accessing insulin. But that doesn’t mean that I don’t care about those who do.

Insulin4All2015

It’s beginning to look a lot like World Diabetes Day. Facebook pages are being turned blue, people are asking is to wear blue and blue circles are appearing everywhere. How November 14 has come around again is beyond me.

So with lots happening this week, here is a quick look at a few things I’ve been seeing in the diabetes interwebs.

The bit where I am ashamed to be an Australian

Yesterday, I read a piece in The Guardian that made my heart break and my brain explode in equal measure.

A woman with diabetes being held in a detention centre on Narau is currently 40 weeks pregnant. Doctors on the island have urged that she be moved to the mainland to receive the care that is required of what is considered a high-risk pregnancy however the ‘medical officials’ (whoever they are) are refusing to do so.

Pregnancy with diabetes can cause problems for both the mother and baby if specialist care is not given. Babies frequently need to spend some time in the special care nursery as they are born with (or develop shortly after birth) low blood glucose which requires monitoring. Mothers often require extra care at the end of the pregnancy, with healthcare professionals keeping a very close eye on the placenta.

Our immigration minister, Peter Dutton, calls this a ‘racket’ and is refusing the doctors’ calls to move her. My heart breaks for the mother and baby. And for Australia. What sort of country am I living in?

Rolling my eyes at concerned healthcare professionals

On page two of today’s Endocrinology Specialist Update with a story about has come out with a story about hacking diabetes devices. Of course, the article highlights how ‘… some doctors and health experts are cautious about the idea of patients taking matters into their own hands’, a comment that made my morning coffee spurt out of my nose.

The president of the RACGP believes that the dangers of such practises would outweigh the ‘perceived’ benefits. He also encourages that ’ … It is important for patients to have a conversation with their GP about any patient-led monitoring system or treatments they use’.  

Not sure about any of you, but my GP – and remember, he’s a good one who understands diabetes – would have the first clue about what CGM is all about, let along how it can be hacked to share my information with friends and family.

Great work RACGP and other HCPs in catching up on this. Nightscout (CGM in the Cloud) has been around for a while now, so this really isn’t new information. Its (closed group) Facebook page has almost 15,000 members. This is just another example of healthcare professionals being clearly out of touch with PWD and what we are doing to live as best we can with this stupid condition.  Also, #WeAreNotWaiting for device companies or healthcare professionals to do this for us. Because if we did, it would never happen.

Melissa Lee uses words that make sense

Every word of this brilliant piece by Melissa Lee is important where she writes about diabetes being a punchline. This is such a balanced post (published on diabetes magazine, A Sweet Life) and I urge you to read it and forward it on.

From now on, along with sending copies of the Diabetes Australia Language Position Statement to anyone who writes something careless about diabetes, I think I’ll link this too. Thanks, Mel. (The only thing that could make this better is if you were to sing it. Could you do that?)

You want some hope?

Here you go. Read this update from Kerri Sparling about the iLet Bionic Pancreas.

In Melbourne? Want to do something for World Diabetes Day?

Come to this on Saturday and celebrate WDD with other people with type 1 diabetes.

Wear Blue

I was reminded of this fun little video that Cherise Shockley made a few years ago. So get your blue on and raise some awareness about diabetes this week and for the rest of the month.

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I’ve spent the day in our nation’s capital for a meeting. And here are two things.

This one made me smile. Because whether it be designing seats on planes or health services, consumer engagement is key.

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And then this. Which made me cringe.

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Why, Canberra, why?

Have a great weekend!

I was pulled up yesterday for getting things wrong about the discovery of insulin. We were asked in a meeting why World Diabetes Day is celebrated on 14 November, and like the nerdy-goody-two-shoes I am, my hand shot in the air and I was called on.  It was like being in year 8 again.

‘It’s Frederick Banting’s birthday.  Banting, along with Charles Best, is credited with discovering insulin.’

‘Stop,’ I was told. ‘Before you keep getting things wrong.’

I was then given a history lesson and told that while Banting and Best were responsible for isolating insulin, it was actually Edward Albert Schafer who discovered it.

So have Banting and Best been heralded all along for something they didn’t deserve? Was it in fact Schafer who should be credited? Well, no. Not really.

It is true; Schafer – actually Edward Albert Sharpey-Schafer – did have a role in the story of insulin. But so did others. Many, many others.

I couldn’t sleep last night, so searched on our bookshelves for my copy of The Discovery of Insulin. I remember reading it years ago and found the history of the little hormone that could absolutely fascinating. As with many discoveries, it was a combination of years of work by many researchers and also, some luck thrown in!  

It was German medical student, Paul Langerhans, who first identified the clusters of cells – islets – in the pancreas, however could not determine their function.  This was in 1869.

A French physician, Etienne Lancereaux confirmed through his research that the cause of diabetes was something to do with the pancreas – in fact, he published a paper coining the term diabète pancréatique (published in 1877). It is Lancereaux who defined two forms of diabetes.

In 1889, two German scientists found that if the pancreas was removed from dogs, the animals developed symptoms of diabetes – excessive thirst, increased urination, weight loss – and died before long. However, these researches – Oskar Minkowski and Josef von Mering – were unable to find the specific chemical responsible for the elevated glucose levels.

This is where Edward Sharpey-Schafer joins the story. Schafer’s experiments – from as early as 1894 – identified that in people with diabetes there was one chemical missing from the pancreas. In lectures at Stanford University in 1913, he named this chemical ‘insuline‘ taken from the Latin word for island ‘insula‘. (Langerhans, in his 1969 dissertation, had referred to the islets in the pancreas as ‘islands of clear cells’.)

However, someone had already beaten Schafer to it. Belgian clinician and physiologist Jean De Meyer is actually credited with coining the term ‘insulin’ in 1909 where he noted: ‘the internal secretion of the pancreas (not as yet named) and which, if derived, as we believe, from the islets of Langerhans, could be called insulin’. Schafer denied any knowledge of de Meyer’s earlier work.

This was all before Banting and Best, in their experiments, discovered exactly what insulin did and how to isolate the hormone. This was in 1921 and it was this work that led to injecting insulin into dogs with diabetes, and in January 1922, the first insulin injection was given to a person with diabetes.

It is Banting and Best’s work that is responsible for me being alive today.

As with any good story, there is controversy and intrigue. Nicolae Paulescu, a Romanian physiologist, is thought by some to have been the real hero in the discovery of insulin. In his experiments, Paulescu showed that a chemical he called ‘pancreine’ clearly lowered blood glucose levels in animals. However, in 1916 when Bucharest was occupied, his experiments were abruptly stopped and he was unable to publish the results of his experiments until August 1921.

I am Australian, but that doesn’t mean I think it’s okay to discriminate against people from other countries.

I am a woman, but that doesn’t mean that I think it is okay to be sexist to men.

I am of no particular faith, but that doesn’t mean that I go around discriminating against people who are.

I am a mother, but that doesn’t mean I think it’s okay to be nasty to women who are not.

I am a straight woman, but that doesn’t mean I discriminate against anyone who is of a different sexual orientation.

I have type 1 diabetes, but that doesn’t mean I stigmatise those with type 2 diabetes.  

So when I saw this initiative from JDRF, I immediately ‘blue-ified’ a photo and stuck in on Twitter and Facebook and Instagram. Because it’s true. T1D DOES look like me.

And then I was kinda baffled at the storm that started brewing because this campaign was considered to be dividing the community.

I had to stop and think about that for a moment. As someone who is rather vocal about how destructive the ‘type wars’ can be, I wondered if this campaign was also contributing to the ‘us and them’ rhetoric.

But I really, really struggled to understand why there was the angst.

There are differences between the diverse types of diabetes. But that absolutely does not mean one is better or worse than the other. It doesn’t mean that one is more serious than the other. It doesn’t mean that one is more deserving of sympathy, or research funds, or attention.

Diabetes awareness is important for us all. And this campaign is brilliant in showing that type 1 diabetes doesn’t have a ‘look’ or a poster child. In fact, it shows that type 1 diabetes is not all about children, which is often how it seems. It presents the diversity of the community and it shows that assuming everyone is the same is a mistake.

T1D looks like me. And like 118,000 other people around Australia and a hell of a lot more around the world.

t1d looks like me

I’m in the middle of a lovely four day long weekend. Because of a horse race. Thanks, Melbourne!


See you on Wednesday!

We have a taqueria just around the corner from our place. As is the norm in our suburb, it’s very hipster – staffed by people far-cooler-than-I’ve-ever-been with bemusing facial hair that I understand to be ironic, but in my mind just reminds me of either a lumberjack, Salvador Dali or someone from a barber shop quartet.

But I can overlook all the posing, because they serve a kick-ass mojito and awesome tacos. Plus, it really is a three minute walk from our place.

We went there the other night. We were kid free (yay for camp!) and within minutes of jumping out of the cab after getting home from Brisbane, we were making our way there. I had been low for much of the two hour flight, my CGM emitting a piercing ‘You’re low, treat it’ alarm and me hissing ‘Shhh. Pay attention to the jelly beans I’ve just eaten’ at it, making me appear a slightly crazed women muttering to a box down her shirt. I also set a temp basal rate, certain that I’d regret it later and would be high as a kite by the time the plane landed. I was wrong.

I was still eating jelly beans in the cab, but at least my CGM line was steady and by the time I paid the driver, it was sitting at 3.9mmol/l and the arrow was straight across. So when we were walking to the restaurant and I could feel the low alarm continuing to vibrate, I was pretty confident that the sugar would kick in soon (like, now!) and all would be right. And the temp basal rate was still active, so not only didn’t I have any insulin on board, but I’d had hardly any basal insulin delivered for two hours.

Tequila soupWe threw our things down at a table and went to the bar to order. Thinking it better to be safe than sorry, I ordered an orange juice alongside my mojito and drank it quickly as soon as it was placed in front of me. I swilled the ice around, making sure I got every last bit of the available sugar.

I could sense that I was really low again, but even through the fog, I knew that a lot of glucose had been consumed in the last hour or so. I subconsciously reached under my top and disconnected my pump, and could feel my skin was slick with sweat.

At this point, I was feeling a little confused because at what I thought was the middle of a conversation, Aaron stood up and walked away from the table to the bar. I couldn’t work out what he was doing (my vision at this stage was unreliable at best). Eventually, he returned with another glass of juice – this time, no ice – and gently put it in front of me.

I drank it in one slurp (graceful) and sat back, reaching into my top to silence the alarm, which was helpfully telling me that I was still low. My mouth was buzzing, my lips and tongue feeling slightly numb.

You were really low,’ Aaron said to me later on.

Really? How could you tell?’’ I honestly thought that I was doing a perfectly good impersonation of carrying on a conversation, and the hypo was not on show for all to see.

‘You started a sentence five times. And never finished it. You just sat there in silence after saying a few words. And eventually would start another sentence. Or the same one. And not finish it.’

I had no idea.

I can’t pin point why I was so hypo. I didn’t ignore the impending low – as soon as my pump alarmed to suggest I was at the low limit (which is set above hypo level so that I do something before actually being low) I started treating. I continued to treat and monitor. I set a temp basal rate. I did everything by the book.

But still, it was a sticky low that wouldn’t quit. There was no shocking rebound – I reconnected my line when we left the restaurant and my CGM was reading 7mmol/l, and the next morning, I woke up feeling fine.

And when I think back to it now – and when I reviewed the CGM graph the next day – I am reminded just how crap diabetes can be at times. It’s certainly not the worst low I’ve ever had, but it was awful.

T.S. Eliot, in a poem, once wrote:

i have measured

While this could also be true for me, it could also be said that I measure out my life in glasses of juice. Lots of juice.

Unfortunately, I couldn’t find any lovely literary quotes to accompany this sentiment. Except this.

Drink juice shelby

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