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With millions of people across the globe, I marched for women’s rights on Saturday. Alongside my beautiful daughter – who is growing into a fearless and fierce activist herself – I stood in solidarity with my sisters from all continents of the world, as we called for protection of our rights.

Solidarity Sisters!

Solidarity Sisters!

It was beautiful in Melbourne – a true mid-Summer day with stunning clear blue skies and a hot sun overhead. We stood on the steps of the State Library – my favourite place in the city – and listened as women from all walks shared their stories and urged us to stand up, rise up and never give up.

After a while, the kidlet and I walked to the back of the crowd, looking for some shade. We found a park bench and she looked for a vantage point to get a look at the rally and wander around to take some photos as I sat down at the other end of the bench to calibrate my CGM.

I quickly pricked my finger and squeezed blood onto the strip. When the number came up, I entered it into the Dex app on my phone.

The woman sitting next to me on the park bench smiled over at me. ‘Me too,’ she said, holding up the bag of jelly beans she was eating.

I beamed back at her. ‘Are you okay? The heat isn’t helping, is it?’

‘I’ll be fine. Just need a few minutes before the march starts. I’ll be okay.’

I smiled again and stood up. ‘We always are, right? Enjoy the march.’

‘I will,’ she said. ‘And you too. One foot in front of the other.’

I nodded. ‘It’s the only way.’

I walked over to the kidlet and we made our way back through the crowd.

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#WomensMarchMelbourne

On 11 January in 1922, a 14-year-old boy in Toronto was given the first insulin injection to treat diabetes. His name was Leonard Thompson, and he lived for another 13 years, before dying of pneumonia when he was 27 years old.

When he was given insulin for the first time, Leonard was on the only treatment available at the time for those diagnosed with type 1 diabetes. He was on a starvation diet, and he was close to death, drifting in and out of a coma because of diabetic ketoacidosis.

There are dates each year that trigger reminder lessons in the discovery of insulin. On those days, I say a silent thank you to Banting and Best for their work, grateful to them for my life and I peek into my refrigerator at the vials of insulin within easy reach for when they are needed.

But I also feel a great sense of sadness and frustration, because today, ninety-five years after Leonard Thompson was given his first insulin injection, this miracle drug is still inaccessible to so many people with diabetes. And people are dying, suffering in the way that Leonard was before he was given the drug for the first time.

Yes, I said ‘suffering’. And I don’t use that word. I don’t suffer from diabetes – I live with it. But make no mistake, someone who cannot access insulin and is dying from diabetic ketoacidosis is suffering. They are in pain; their body is in distress. They are dying.

The playing field is so un-level and that is simply not fair. So if you are able to – if you are one of the fortunate ones with insulin in your fridge, please do consider donating to those who are not.

Insulin for Life Global needs donations to fund transport costs for delivering insulin to those most in need. AUD$12.50 will cover the cost of sending two weeks’ worth of insulin.

Around Valentine’s Day each year, Spare a Rose, Save a Child suggests sending 11 instead of 12 roses. The AUD$6 saved provides insulin for a month to child with diabetes through the IDF’s Life for a Child program.

And for AUD$10, T1 International will send out their advocacy toolkit to five people with type 1 diabetes, providing information about how they can stand up for their rights.

Click image for source

(Click image for source)

 

Last week, my Timehop app reminded me of this snapshot in time.

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This photo was taken at the 2013 International Diabetes Federation’s World Diabetes Congress in Melbourne, and that look on my face is of pure anger. I was listening to a speaker – a doctor – referring to ‘non-compliant diabetics’ as he was telling of the ‘poor outcomes’ of ‘patients’ in his practise.

The old language chestnut came up again on the second day of the #MayoInOZ conference during the innovation showcase was held. In this session, nine speakers were each given five minutes to present how they are using social and digital tools to improve healthcare. (This is where Kim spoke about #OzDOC and how healthcare professionals use the hourly tweetchat as an opportunity to engage and learn from people with diabetes.)

The final speaker in the innovation sessions was a late addition and it was great to see diabetes again being represented. I know I am biased, but I do always get excited when I see diabetes on the program!

Andy Benson from Coffs Endocrine and Diabetes Centre presented on the project she has been working on: telling the story of diabetes in a series of documentaries to be screened on the BBC.

So, first things first. I love this idea. I am a huge fan of having diabetes out in the ‘public’ space, pulling it out from diabetes groups and diabetes-specific forums, because in most of these cases, we’re preaching to the converted. It’s one of the reasons I love writing for Mamamia Women’s Network where I know that most of the readers probably don’t already have a connection to diabetes.

If these documentaries are screened on the BBC, imagine the audience! It is so refreshing to see people thinking outside the box and looking for ways to present to a new audience – and to tell stories, real stories of real people who actually live each day with diabetes.

Andy showed two short video clips from the still-in-development documentaries. As healthcare professionals on screen spoke about diabetes, I automatically prickled, my language and stigma sensors being alerted straight away.

I wasn’t the only one. In a room with two other diabetes advocates – Kim, Melinda Seed (Once Diabetes), as well as several very vocal health advocates and activists, there was a sense of discomfort at what we were seeing.

I inhaled – maybe ‘gasped’ is a better word – when one of the HCPs used the words ‘diabetes plague’ in his introductory words. There was an undeniable sense of blaming the person with diabetes in the words being used and the sentiments being expressed.

The Twitter conversation from both people in the room and those following along was honest and candid. And, quite frankly, it was uncomfortable too. Andy had disclosed that she has type 1 diabetes, and I didn’t want to be actively criticising the work of a fellow PWD.

However, I could not keep quiet either. When Andy came over to chat after her talk, we had a very open discussion. I was probably quite blunt in my comments.

It is not okay to use language that is stigmatising. The format of the information being presented (i.e. unscripted interviews) doesn’t preclude anyone from being courteous and respectful, and I don’t believe that PWD were being treated either courteously or respectfully in the way about which we were being spoken.

I understand that there is a desire for authenticity and genuineness when interviewing documentary ‘talent’, however it is possible to be clear from the outset that language needs to be respectful at all times. Not sure where to begin with this? How about the Diabetes Australia Language Position Statement which actually provides suggestions for inclusive, non-stigmatising language?

I think it is really important to acknowledge that the road to satisfaction in the way we use language that is inclusive and non-stigmatising is a very, very long one. Also, I genuinely don’t believe that there was any malice intended on the part of the film makers or the interviewees.

We also need to acknowledge that the language used in what has been (and many would argue continues to be) a patriarchal health system is entrenched in the thinking of many – it was part of their training and is a habit that will take time to break. But by acknowledging it, we are not saying it is okay.

As I said, I love the idea that diabetes is a topic for a documentary that is being made for a non-diabetes-specific audience. However, if those people walk away thinking that my healthcare condition is a burden to society (and therefore I am too!) or that they believe it is okay to continue to use words that stigmatise, then there is the potential for this work to do more harm than good.

And finally, a call to not only the coordinators and owners of this work, but to all who are developing any sort of health information using any sort of platform: talk to people with the condition. Lots of them. It is not okay to have one token consumer representative; there should be many – as many as (if not more than) any other expert being consulted.

A couple of weeks ago now, I was incredibly fortunate to win a scholarship to attend the Mayo Clinic’s Healthcare and Social Media Summit in Melbourne. I’m a little slow in getting anything out about it, because…well because November. But November is over! And finally, the first of the few posts I’ve started is here and the others are coming. #Tardy

Five scholarships were offered for consumers to attend, and I was encouraged to apply. So, I diligently filled in my application, hitting ‘submit’ moments before the deadline. (Not to self – always have an up-to-date bio available!) And then, the week before the conference, I squealed aloud in a meeting when I received the email, letting me know my application was successful.

The scholarship recipients. (Click photo for source.)

Before the event even started, there was online chatter about making sure the consumer reps in the room connected. Which we did! Before and throughout the conference, calls to ‘find your tribe’ resonated, and I certainly felt I had found mine! It was an absolute delight to meet and an honour to wave the consumer flag alongside Carly, Mel, Liat and Belinda.

And others in the tribe made me realise just how high the bar is set! Lisa Ramshaw, event organiser, is a force of nature. There is no other word for her enthusiasm and dedication to healthcare social media. I suspect Melissa Cadzow has #patientsincluded tattooed on her body somewhere so great is her commitment to the inclusion of consumers in all activities that affect us!

Kim giving her talk

And of course, the five-minute presentation in the innovation showcase from Kim Henshaw about OzDOC presented another strong consumer voice to the event. Kim spoke about how healthcare professionals use the weekly tweetchat as a platform to learn and engage with consumers. Kim did the OzDOC community proud with her talk, using her time to accurately crystalise the very essence of the power and influence of an online network.

It’s these people that are the reason I love these sorts of conferences – and their like-minded attitude, and endless promotion of the importance of the consumer voice and the value of using social to connect, inform and support. This is mostly a huge positive, but it does get me thinking that the people who should also be in the room probably aren’t. Organisation CEOs need to be better represented to be taken on the journey of why HCSM cannot be dismissed as ‘the way of the future, so we’ll get to it soon’, but rather ‘It’s here. We need to Do.It.Now.’ This would inform a true real top down / bottom up approach to embracing healthcare social media within their organisations.

The diabetes contingent: Me, Kim and Mel

The underlying message of the conference – at least for me – was reinforcement of something that I have known and promoted for a long time: health social networks bring people together. Before online social platforms, we did it face-to-face. The message of the ‘modern day kitchen table’ was brought home to me again and again and again, and I understood that the barriers to using social are absolutely not insurmountable – despite feeling that way at times with all the justifying we seem to have to do.

And the message of ‘Connected communities get more done’, rang so true. I thought to the first morning of the conference when I was late because I’d been moderating an hour of the 24 hour World Diabetes Day tweetchat, talking diabetes stigma with people from all over the world, affected by diabetes. I thought to the Spare a Rose; Save a Child campaign. I thought about #DSMA and #DeDOC and #OzDOC and all the ways that our own diabetes community connects to get things done.

My conference fees for the two days of the #MayoInOz conference were covered through the consumer scholarship program. I was not expected to write anything in exchange for the scholarship. Thank you to the organisers of the event, Consumer Health Forum Australia and Melissa Cadzow for the scholarship. You can read more about the conference by clicking on this link for tweets.


Yesterday, I went to the fridge and pulled out a fresh vial of insulin. I used it to refill my insulin pump and then placed the mostly-full vial in my bag. As it was the second to last vial from my current prescription, I called my local pharmacy and asked if they could order me in a repeat of my prescription.

And then I wandered to a favourite café for breakfast and didn’t think about it again. I knew that the following day I’d receive a call from the pharmacist telling me that my insulin was waiting for me and I’d go in on my way home from work, fork over $40 and be set for another three or so months.

Rocking my new Insulin for Life Global tee. So honoured to be an ambassador for this worthy cause.

That’s not how it works in a lot of other places around the world. And it’s why when I was contacted by Joanna Sader from Insulin for Life Global asking me to be an Ambassador for the organisation, I didn’t hesitate before answering ‘Of course!

Insulin for Life has been around for a long time. I remember when I was very new to the diabetes organisation world hearing all about it from the organisation’s founder Ron Raab. And then, a couple of years ago, I saw a wonderful documentary, Sweet 16, about the program, made by a young woman from Canada.

The organisation has continued to expand over the years, and today, on World Diabetes Day, is launching Insulin for Life Global (IFL Global). The organisation contributes to international efforts providing insulin to people unable to afford or access insulin or diabetes supplies in developing countries.

IFL Global, through its country affiliates, collects in-date and unneeded insulin and diabetes supplies, distributing them to developing countries, where they are distributed free of charge. It also fundraises to support transport costs, which is the biggest barrier to keeping the operation going.

You can learn more about the program by going to their new website and by watching the video below.

How can you help? Glad you asked! There are many ways you can get involved including making a one-off or regular donations, promoting their work through your networks or donating unused, in-date insulin and diabetes supplies. Details about how you can contribute to IFL Global can be found here.

I write a lot about remembering to look outside our bubble of privilege. Insulin for Life Global is another player in the space reminding us that diabetes drugs and supplies are not a right for all. And we can – and should – do something to help. Our diabetes brothers and sisters around the world do not deserve to die because they cannot access the life-saving drugs so many of us take for granted.

 

A couple of weeks ago, I spent a very uncomfortable hour talking to someone who was telling me that the very idea of sending any sort of health aid to another country was horrendous because the situation here in Australia is so dire. They went on to say that the refused to support programs helping people in other countries access insulin and diabetes supplies because that was the responsibility of the government of that country.

I’ve thought about the conversation a lot. And then today, on my TimeHop app, this post from last year came up. I wish I had  remembered these words then because I sat there mute after trying to explain why it’s important that we help others who are not as fortunate as we are here in Australia and being cut off and told I didn’t know what I was talking about. I decided that there was simply no point in trying to argue.

So today, I thought I’d share the post. Remembering to look outside our own bubble is always important, And today -especially today – it seems even more critical.

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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 I was involved in running an activity or speaking about a topic at an event, people say that they have never had any problems with that, so why would we speak about it – completely ignoring the fact that for lots of people living with diabetes this is an issue that is of concern.

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 thinking of 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 next 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 2014’s WDD.

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

I have written (frequently) before about T1 International and I am going to do it again this Diabetes Awareness Month.

Because the team at T1International have a new initiative: they are urging people to sign their Type 1 Diabetes Access Charter which outlines five rights that all people with diabetes should have:

  1. The right to insulin
  2. The right to manage your blood sugar
  3. The right to diabetes education
  4. The right to healthcare
  5. The right to live free from discrimination

None of these things are luxuries. These are basic human rights that should be afforded to every single person diagnosed with diabetes – not just those of us lucky to be born in a country such as Australia. Insulin is not a new-fangled, fancy drug. It has been around for 95 years. When talking about the right to the tools required to manage bloody sugar, we are not talking latest technology such as continuous or flash glucose monitoring or hybrid-closed loop systems that are entering the market. We are talking about basic blood glucose meters and strips.

The reality is that around the world, many people cannot access or afford insulin or diabetes supplies. Education is sporadic at best. People with diabetes are being forced to choose between buying insulin and buying food or other essentials. How do you make the decision between putting food on the table or buying the life-saving drug you – or your loved one – needs to stay alive? It’s a decision that most of us in Australia never have to even contemplate, but it is a reality for many, many people around the world.

I messaged T1 International founder, Elizabeth Rowley, yesterday to let her know I would be writing about the charter today, but I also wanted to comment on a Facebook post she had just shared.

Elizabeth had used the JDRF diabetes stats calculator (as discussed in yesterday’s post) and shared her results. She had a very different take to how many others responded.

She reminded us that she is the one of the lucky ones because in her almost 25 years as a PWD, she has been able to access whatever she has needed to manage her condition.

When I did my diabetes numbers, I looked at the terrifying number of BGL checks I have done over the last 18 years: 34,749 (although Aaron did suggest that during pregnancy alone I would have done that many!). Not once have I ever had to wonder from where I would be getting my next box of strips. Not once have I thought about rationing strips or pump consumables for fear that I could not afford more when I ran out. Not once have I had to consider taking less insulin that I need.

The scary thing about the numbers generated by the JDRF calculator is not the huge numbers many of us are seeing tallied up. In fact, it is actually the small numbers in those people with diabetes who can’t access what they need to manage their diabetes.

T1 International is doing some amazing things – just as they have done since they started a yea few years ago. Please check out their website, click below to sign the charter and get your friends and family to sign too, and if you can, make a donation to this really important cause.

I am very fortunate to have a job that I truly love. But it could not be described as a particularly sexy job. At least, not the regular-day-to-day-this-is-what-I-do-when-I-am-in-the-office side of things.

I worked in recruitment for a while and the constant buzz and thrill of the game was intense. We had an old-fashioned bell in the office that would be rung when we made a particularly lucrative placement. Working on commission meant that there were dollar signs in front my eyes all the time, and I measured success in thousand dollar increments. It was sexy because it was quick, constant and there were constant wins.

Now I have a job that is what I refer to as a slow burn. Things take time, advocacy efforts are often long and drawn out, and the wins are rare. But jeez are they meaningful and worthwhile when they happen! They shoot an injection of momentum right when and where we need it, and it means we very quickly acknowledge the win and then focus on the next issue.

Sometimes people don’t realise just how long things take. When the pre-election announcements about CGM subsidies were made, a number of people commented that we’d had a busy few months to make it happen. I couldn’t help but laugh. And correct them. That particular win had been over four years of hard work.

But we take the wins were we can and this week, we’ve had a win!

The revised Assessing Fitness to Drive guidelines have been released by AustRoads and the National Transport Commission, and it’s a good news story for people with diabetes.

You may recall that there were some real issues with the previous guidelines after the completely misinformed and confusing inclusion of a definition of ‘satisfactory control of diabetes’. An HbA1c of over 9% was defined as ‘unsatisfactory control. Whilst the Commission stated that the A1c value was intended as nothing more than a guide and a trigger to seek professional care, the reality is that many people with diabetes had their licences suspended with their HCPs taking the value as a cut-off point.

As Diabetes Australia consistently argued, there is no evidence to suggest that an elevated A1c makes a person with diabetes more dangerous on the roads. In fact, this focus on an elevated A1c was actually detracting from hypoglycaemia, which is something that does need to be considered.

In the new guidelines, the number has been removed which is an excellent outcome for PWDs. And added to the document is far more focus on impaired hypoglycaemia awareness and keeping safe on the roads.

This change didn’t happen because we asked nicely. In fact, it took four years – from when the last guidelines were launched and we started to hear of people with diabetes having troubles – for the change to be made.

It took a lot of advocacy: letter writing, speaking with people who had been negatively impacted, meetings and teleconferences, and revising documents.

This is what I mean when I say that my job is unsexy. All of the work that was done behind the scenes – the slow burn – is decidedly unsexy! But it has to be done to get the wins.

I’ll admit to doing a very quick victory dance when I heard about this particular win. But the celebrating didn’t last long.

Because there is so much more unsexy work to do. Until people with diabetes are no longer discriminated against; until diabetes stigma is something we only speak about in the past tense; until kids with diabetes in schools are freely given all the same opportunities as their peers who make their own insulin; until access – to drugs, technology, healthcare – is available to all, the unsexy stuff will keep happening. You probably won’t hear about it until there is good news, but the wheels keep turning and the fire keeps burning slowly.  As I said in this post here, it’s the reason I do what I do.

The new Assessing Fitness to Drive guidelines can be downloaded here.

Four years ago in Rome, I made Aaron take a photo of me with just about every old Fiat Cinquecento we saw. There are a lot of photos of me with tiny cars!

Four years ago in Rome, I made Aaron take a photo of me with just about every old Fiat Cinquecento we saw. There are a lot of photos of me with tiny cars!

Disclosure

I was a representative on the Diabetes Working Group revising the diabetes chapter of the new Guidelines. This was part of my role at Diabetes Australia.

If you have not caught up with what happened in the opioid session at MedX this week, please do. ePatient, Britt Johnson, who blogs at Hurt Blogger wrote this outstanding piece about her experience on the panel in a session titled ‘The Opioid Crisis’ where she was pretty much ignored by the moderator of the panel. I read her piece in dismay because Britt’s experience is all too common.

As I wrote on Facebook yesterday, it is these twelve words of Britt’s post that are, for me, most telling:

The plan had been to feature me in the final five minutes.’

This was the response from the moderator of the panel when she was challenged as to why Britt has been ignored whilst on stage.

The final five minutes.

That’s right. After the healthcare professional experts got to say what they wanted; after the moderator directed the discussion in a direction to get what she wanted; after everyone but the patient was given an opportunity to speak. Then, and only then, would Britt have been given the opportunity to say what she wanted.

The final five minutes.

It’s the equivalent of being given a completed resource, almost ready to go to print and being asked to provide feedback. It’s the same as being a perfunctory consumer on an advisory board, often added at the last minute to tick a box.

This token and downright insulting attitude about where ‘patients’ fit into the healthcare puzzle is toxic.

We have become accustomed and too accepting of the status quo. We feel humbled when we are added to a panel discussion when, really, we should be the main event. We are honoured to be asked to provide feedback on an already developed service that we are meant to use because we mistakenly believe our opinion is being sought and matters even though it’s too late for our feedback to be taken on board. We believe we are doing well when a consumer is added to an advisory board made up predominantly of clinicians and researchers because, hey, it’s a start.

A start is not good enough anymore.

I am angry. I am so angry about this. I am angry about what happened to Britt at MedX. I am angry that there was not a single person with diabetes on the program at this year’s ADS ADEA conference. I am angry that it is 2016 and we still have to beg for a place at the table, on the panel, on the Board. I am angry that conversations ABOUT us are happening AROUND us. I am angry because there’s never a hesitation then it comes to convening a clinical advisory group, but a struggle with how and where to engage and appoint a consumer advisory group. I am angry because too many think ‘focus testing’ means engaging at the end, and that it is enough.

But mostly, I am angry at myself. I am angry for this post I wrote last year where I pathetically felt grateful because people with diabetes were quoted at a conference – not actually handed a microphone, not actually invited to sit on a panel, not given an opportunity to lead the discussion. We were quoted and I thought that was enough.

It was our final five minutes. And, actually, it wasn’t enough.

We are more than the final five minutes.

We are more than that; we are so, so very much more.

Apparently, I went to Munich. I was away for 6 days, and 60 hours of those days were spent in transit. I believe that, (as I deal with jet lag, hypoglycaemia, and mainlining caffeine), it is fair and accurate to say that I am too old for this shit.

I am also incapable of forming paragraphs. But dot points are fun! Here are some observations and a few silly thoughts from last week. (I’ll write some sensible things when my brain is back in the same country as the rest of me.)

  • I am told by people Munich is a lovely city. I will have to take these people’s word for it, ‘cause I saw very little of the city.
  • I did not buy a dirndl and for this, I will be eternally sorry. As will my husband.
  • The EASD conference itself was, as predicted, very rats and mice-y. I sat in a number of sessions and wished I was a mouse (while wishing my diabetes away). Alas, I am not a mouse. And I still have diabetes. Damn.
  • I did not get sick of laughing at the fact that one of the halls at ICM Messe München is called Langerhan Hall. Also, I did not get sick of saying ‘I wonder if my islet cells are in there’ – to everyone within earshot. Even if I didn’t know them.
  • Obviously, Grumps was not as amused by this as me.

  • As was the case at ADA, my arm is more recognisable and famous than me. A barista at one of the exhibition hall stands said, as making me a decent coffee, ‘Oh – I know you. I saw your arm the other day near the station.’ I am a walking billboard for Rockadex! (I am not sponsored by Rockadex and purchase my own patches.)
  • Dr Kevin Lee from Queensland is a tweeting machine! In fact, I think the thing I was proudest of at EASD was seeing him tweet! (Actually, probably should say that Professor Mark Cooper’s giving the Claude Bernard Lecture was also a moment of national pride, but Kevin’s tweeting was on another level!)

  • One of my favourite talks was about diabetes, cardiac health and exercise (go on, laugh….), but that was mostly because presenter Dr Nikolaus Marx, finished up with a discussion about passive exercise and cardiovascular events during the World Cup. If you were in the room, it was me who cheered when he mentioned the increase of cardiac events after Italy beat Germany. (#VivaItalia!). For clarification, I was cheering at Gli Azzuri’s victory, not the number of Germans having heart attacks. (By the way, this was a real study. Published here.)
  • A HUGE shout out to these three women. AADE presidents elect, past and present, Nancy D’Hondt, Deb Greenwood and Hope Warsaw are absolute advocates for and champions of people with daibetes, and peer support. This is them at the docday blogger and advocate event. This level of commitment by HCPs to consumer engagement is enlightening, and a lot could be learnt from their example here. Thank you. Thank you. Thank you!

  • It was wonderful to see quite a lot of discussion about AP. Anytime someone wants to actually get these into market and into the hands of people with diabetes, that would be just great! Thank you.
  • I may have screamed a little when I wandered through the Association Village to the excellent historical display of diabetes by the German diabetes Association. Terrifying might be the word for these needles. I said a little prayer of thanks to the diabetes angels for modern day tech, and for being diagnosed in 1998.

  • I need to take a break from twitter. This was the state of play when I said good bye to the conference.

And finally, a word about language, because I am unable to attend a conference and not talk and write about it. (I think it’s actually become a law somewhere.) This probably deserves a post of its own and that may happen, but here we go anyway.

This is the fifth EASD conference I have attended, and going in, I know that it is going to be challenging, language-wise. There often appears to be very little consideration that there could be PWD in the room listening in to how HCPs are speaking of us. In the opening ceremony, I tweeted this at EASD president, Professor Juleen Zierath:

I was a little disappointed at Professor Mark Cooper’s constant use of ‘diabetic’, but it was by no means any more than most of the other speakers. I suppose I just hold Australian speakers to higher account given the work we have been doing here around language and diabetes.

This tweet generated quite a lot of discussion, and came about after I was exhausted and annoyed and mostly frustrated by the way speakers were referring to people with diabetes.

 Perhaps the best response was from Nick Oliver:

Here’s the thing – and it is something I spoke about during my talk at the DOCDAY event. Language DOES matter. We all know that. It’s completely and utterly disingenuous to say it doesn’t. For some people, it doesn’t bother them and that’s terrific. For others, though, it really does. So why would anyone do something that may offend when it is so easy to avoid that?

DISCLOSE DISCLOSE DISCLOSE

My (economy fare) flights and accommodation expenses were covered by AMSL and J&J. I was attending the EASD conference mainly to attend the J&J DOC exchange meeting which I was involved in preparing and presenting. No one ever expects me to write anything. These are my words and observations only. (And seriously, have you seen what I have just written? No one wants to be associated with that!)

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