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It’s no secret that I have had some problems with my local licensing authority (VicRoads). It’s also no secret that I have been annoyed and rather vocal about the Austroads 2012 Assessing Fitness to Drive Guidelines – specifically, the introduction in 2012 of the ridiculous section defining ‘satisfactory control of diabetes’ as an A1c of 9% (and the ensuing problems it caused!)
Austroads and the advisory group involved in putting together the guidelines a couple of years ago claim that this value was never meant to disadvantage people with diabetes; that it was there to simply trigger further, specialist treatment. And that it was never intended as an automatic suspension of a driver’s licence.
That may have been the theory. The reality was quite different. Many people with diabetes reported that their treating doctor did in fact interpret the guidelines as meaning that a 9% or above A1c was grounds for licences to be suspended. And that is what happened.
But here is some good news. The new draft guidelines – currently open to consumer consultation, and due for release later this year, have removed the A1c value defining satisfactory control of diabetes. It’s been a long process, but thanks to a lot of advocacy by Diabetes Australia, this is an excellent result for people living with diabetes in Australia.
One of the most enjoyable things about my job is the policy work in which I am involved, and I was pleased earlier this year when I was asked to join the working group reviewing and revising the diabetes chapter in the Guidelines. (Disclaimer: this is part of my work at Diabetes Australia and I was asked to represent the organisation on the working group. Diabetes Australia has received a significant number of complaints from people with diabetes who had been negatively impacted when the 2012 Guidelines were introduced and I have been involved in this work since then.)
The outcome of the review has been that some parts of the diabetes chapter have been completely rewritten. The advocacy efforts led by Diabetes Australia and involving the ADS and the ADEA, resulted in the removal of the 9% (arbitrary) value being eliminated. This is an outstanding outcome.
So, now it is your turn to do a little advocacy.
If you have some spare time over the next couple of days, and you feel really strongly about this issue, now is the time to get on board and participate. The point of public consultation is that people who are directly affected can have their say. If you have diabetes, you are directly affected. If you are the parent of a child with diabetes who, at some point, will want a driver’s licence, you are directly affected.
All the details of the consultation can be found here, including how you can make a submission. I urge you to comment – even if that is to simply say that you support the changes which should ensure that people with diabetes are not losing their licence because for a reason without an evidence base. And you might like to also add that you support the Guidelines’ focus on hypoglycaemia which absolutely can and does affect safe driving. Quick sticks – the consultation closes tomorrow.
At the risk of sounding Grinch-like, there is one thing about Xmas that really, really annoys me. It’s Kris Kringle (sometimes called Secret Santa). We also do a version called ‘Bad Santa’ which is unusually cruel in that people are able to steal gifts they prefer from others.
I find them all a complete and utter waste of time and, quite frankly, money. All up, we (Aaron and I) spend about $120 on KK gifts each Xmas – four KK gifts at the limit of $30 per gift. Please understand it is not the total cost that annoys me. It’s the total waste of it.
At the risk of sounding ungrateful, I don’t need anything. And for $30 I struggle to find something that is fun (and different from the bottle of wine/designer tea/candle that I usually buy).
I have made this very clear to my family who, if reading this, please ignore my Scrooge-iness and let’s all have a nice Xmas dinner!
For a few years now, I have suggested that instead of buying gifts for each other, we pool our $30 each and make a donation to a charity. It actually would add up to a decent amount and has the potential to make a significant difference in the lives of people far less fortunate than us.
Of course, for me, there would be no better way to spend this money than on a charity that is improving lives of people living with diabetes. With the $120 that just Aaron and I spend on KK presents, we could provide life-saving insulin for two years for a child in a country where medication is prohibitively expensive.
I am sure that I will love the bowl or bottle of champagne or colouring-in book I receive from my KK this year. But really, it will make no difference in my life. It will not improve it. Again, I get that I sound ungrateful to the cousin or aunt who has purchased this gift for me, and while I don’t mean to, it is the way I feel.
It feels wasteful. And there are so many ways that the money could be better spent.
So, today I have made a couple of donations. I have made a donation to Spare a Rose, Save a Child, adding to the monthly contribution I already make. The money I have donated will go to the IDF’s Life for a Child program and provide insulin or BGL strips for 12 months to a child who would not otherwise be able to access these supplies.
And I am also making a donation to Type 1 International to help their work in ensuring people with type 1 diabetes around the globe have access to insulin, diabetes consumables and medical care.
If my KKs are reading this, please feel free to give me a handmade card with a little note telling me you have donated the amount of my gift to either of these charities – or another one that you support. I promise that I will think it the best KK present under the tree, and I also promise to stop being a Grinch!
Our Xmas album collection is eclectic. One album that is on frequent rotation in the silly season is Bela Fleck and the Flecktones and their version of The Twelve Days of Christmas is different to say the least! Enjoy if you can.
‘Don’t you ever get tired of talking about diabetes?’ I get asked this quite a lot. And I can see why. There is a lot of diabetes in my life, and I do speak about it frequently.
The truth is that I don’t get tired talking about diabetes. I get tired talking about my diabetes, but the subject of diabetes is one of which I never tire. Diabetes is too hard for too many people – for all sorts of reasons – and until that is not the case, there is too much to do. Being tired or bored is not an option!
Advocacy can be a broad term. It can refer to political process, influencing policy change or promoting people’s rights and responsibilities. It can also be about raising awareness. It can be small or large scale. It can be about groups or individuals.
Advocating for self can be tiring. Often the times we need to be our biggest campaigners and put in the most effort are the times when it is the most difficult. Standing up to hospital staff who want to strip us of our right to manage our own self-managed condition is all good and well and we can get all assertive and angry about it and talk about what we would do if it happened to us. But that moment when we are actually in A&E for an accident or emergency situation, actually standing up for our self may simply be just too hard. Or impossible.
I know that my advocacy energies are different when I am feeling ‘over’ my diabetes. I tend to sit back a little more and not put myself out there so much. And I look for what others are doing and turn my attention and focus to that. It’s kind of like advocacy-by-proxy!
That’s why larger scale advocacy is really important. Big awareness raising campaigns are important – sometimes there is an ask (such as more funding or increased attention to the condition). Other times it’s just to inform people about the state of diabetes affairs.
A lot of the time, it’s not all huge and loud with lots of media coverage – often there are behind the scenes machinations that take a terribly long time, are terribly boring and involve a lot of bureaucracy and paper-pushing. (One great example of that is the three-year-long battle that has been trying to fix the mess up of introducing a ridiculous definition of ‘satisfactory control of diabetes’ in the current Assessing Fitness to Drive guidelines. The revised guidelines are up for public consultation at the moment and I am thrilled to see that the 9% A1c measure has been removed. These advocacy efforts undertaken by a number of Diabetes Australia staff – myself included – will be of significant benefit to people with diabetes holding a driver’s licence. Blog post to come soon.)
Advocacy doesn’t have to hit you over the head. It doesn’t need to be angry and aggressive. It is great when it is innovative and challenging. And it is okay if it makes you feel uncomfortable. In fact, sometimes we want things to be confronting and a little prickly as that can be a catalyst for people start to think and act.
So, a couple of things I thought I’d mention that tick a lot of advocacy boxes.
Today, Kelly Kunik launched the I Wish People Knew That Diabetes website following a hugely successful awareness-raising campaign back in April this year. Go have a look at the site and explore what she has to say.
Festival21 is being held in Melbourne on Friday 11 December. Sandro Demaio’s advocacy efforts are significant for many reasons, one of which is just how innovative and ground-breaking they are. The aim of this initiative is to address some of our most considerable social challenges, including sustainability, promoting healthy communities and climate change, with food as the central topic. To give you an idea of what Festiva21 has in store, this from Sandro in today’s online newspaper, Broadsheet, ‘We’re talking about empowering people to realise that the food on their plate is one of the most powerful tools they have for change. Food is a truly unifying factor across all schools of thought – politics, religion and race. Everyone loves food and everyone loves to eat.’
Last night, I was lucky enough to attend the 2015 Research Australia Awards Dinner and celebrate the best in Australian health and medical research, and advocacy
The reason I was there was to tweet. Actually, that’s not the truth, but I thought I should mention it considering that both emcee, (ABC’s national health reporter) Sophie Scott, and Diabetes Australia CEO, Greg Johnson made particular reference to it when addressing the audience.
The real reason I was there was because Diabetes Australia was awarding its annual Outstanding Award for Diabetes Research.
This year’s winner of the award is the inimitable Professor Peter Colman from the Royal Melbourne Hospital.
I could spend words and words and words explaining why Peter is a worthy recipient (read here for just some of his wonderful work). Anyone who knows him – or knows of him – would understand why he was a most deserved winner. His acceptance speech was, as expected, humble and appreciative. And he offered an insightful perspective of diabetes research.
The other highlight for me was the Advocacy award which this year went to brother and sister team Connie and Samuel Johnson who are responsible for Love Your Sister. Connie is living with terminal breast cancer and together with her brother has been raising awareness about the importance of young women being ‘breast aware’ and raising money for breast cancer research at the Garvan Institute.
Connie gave an impassioned speech about why medical research is critical to cancer. She implored that we need to stop the misconception that thinking positive cures cancer. ‘The real fact of the matter is that medicine cures cancer,’ she said. ‘Not postive thinking; not prayers.’
Obviously, Connie was speaking to a room full of researches; she was preaching to the converted. But she is absolutely right. Advances in medicine and improved outcomes – whether in cancer, diabetes or other health conditions – are due to research. They are not due to people being optimistic and cheerful.
I like to think that I am a very positive person, but no amount of positive thinking is going to beat my BGLs into submission or frighten my beta cells back into action.
That doesn’t mean that I am throwing myself a pity party, and I certainly don’t think that is what Connie was suggesting. For me the balance is this: feeling positive or having a positive attitude is all good and well, and it probably does make the day-to-day acceptance of living with diabetes easier. But it is the insulin, the devices and the tools I use that actually treat my condition.
We need more money going into medical research. We need to reward our medical researchers for their work and commitment and dedication. I was honoured to be in a room full of these incredible people last night and so glad that I got to personally thank and congratulate one of my diabetes research heroes.
(All this reminded me of this e-card which is cheeky, but makes me laugh every time I see it!)
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.
Very 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
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.
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.
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.
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.
Diabetogenic 