You are currently browsing the category archive for the ‘Advocacy’ category.

One of the real pleasures of working in the health sector has been learning from people outside the diabetes space. So much of my work is contained to the goings on in the World of Diabetes, but it is always fascinating to hear from people who are dealing with different health conditions. 

And so, it is no wonder that I was enthralled during an event I was involved in for APPA a few months ago. One of the things I really appreciated about this webinar was APPA bringing in discussions about person-centred care, person-centricity, and the role of lived experience in medical affairs. It’s a tricky area thanks to obstructive codes that often act as a barrier to real engagement and involvement from those of us with lived experience.  

I was thrilled to hear from Richard Vines, Founder and CEO of Rare Cancers Australia, especially his thoughts about the role of people with lived experience of rare cancers in his organisation’s advocacy efforts. 

Richard spoke about how active and involved families of people with lived experience of rare cancers are in their advocacy efforts. He told a lovely tale of the myriad notes and small gifts in the (now previous) health minister’s office that had been sent to him from families who he’d met through the organisation’s lobbying and advocacy campaigns, thanking him for increasing funding and helping raise awareness of rare cancers and the challenges faced by people diagnosed with one. Richard shared that involving and including those people in all their activities was key to his charity’s success. It didn’t surprise me one bit that his attitudes closely mirrored the ‘Nothing About Us Without Us’ calls that form part of my daily advocacy. 

The APPA event was back in March, and it coincided with the handing down of the Australian Federal Budget. I, along with many other people with diabetes, were devastated to learn that there was no funding allocated to broadening access to the NDSS CGM initiative. That, of course, came a month later as an election promise, but at the time, we didn’t know that. 

Before that bipartisan election promise, many people with diabetes had dual frustrations of being blocked from affordable access while at the same time knowing that there have been Living Evidence Guidelines for type 1 diabetes technology for over a year now that clearly state that CGM is recommended for all adults with T1D (over BGL monitoring). 

It makes no sense that professional and lived experience bodies have taken the latest and best evidence to provide guidelines for the best use of technology in the management of type 1 diabetes only to have limited funding to make it a reality. But I wondered just how many people the health minister had heard from – really heard from – to understand that. I wonder if he has letters of thanks from people with diabetes in his office.

The message that came home loud and strong from Richard Vines was that advocacy success is more likely when there is strong representation from those with lived experience to round out the story provided by evidence and guidelines. Hearts and minds. Minds and hearts. 

We need more ‘hearts stuff’ from those that generally use evidence to support their case, and more ‘mind stuff’ from those who generally use lived experience to support theirs. And the lived experience must come – it can only come – from those with real skin in the game, not those adjunct to it, or claiming to speak for it. 

Disclosure

I was invited to be a panellist for this Australian Pharmaceutical Professionals Association webinar and volunteered my time. 

Throughout ATTD I got to repeatedly tell an origin story that led us to this year’s #dedoc° symposium. I’ve told the story here before, but I’m going to again for anyone new, or anyone who is after a refresher.

It’s 2015 and EASD in Stockholm. A group of people with diabetes are crowded together in the overheated backroom of a cafe in the centre of the city. Organising and leading this catch up is Bastian Hauck who, just a few years earlier, brought people from the german-based diabetes community together online (in tweet chats) and for in person events. His idea here was that anyone with diabetes, or connected to the conference, from anywhere in the world, could pop in and share what they were up to that was benefitting their corner of the diabetes world. I’ll add that this was a slightly turbulent time in some parts of the DOC in Europe. Local online communities were feeling the effects of some bitter rifts. #docday° wasn’t about that, and it wasn’t about where you were from either. It was about providing a platform for people with diabetes to network and share and give and get support.

And that’s exactly what happened. Honestly, I can’t remember all that much of what was spoken about. I do remember diabetes advocate from Sweden, Josephine, unabashedly stripping down to her underwear to show off the latest AnnaPS designs – a range of clothing created especially to comfortably and conveniently house diabetes devices. It won’t come as a surprise to many people that I spoke about language and communication, and the work Diabetes Australia was doing in this space and how it was the diabetes community that was helping spread the word.

I also remember the cardamom buns speckled with sugar pearls, but this is not relevant to the story, and purely serving as a reminder to find a recipe and make some.

So there we were, far away from the actual conference (because most of the advocates who were there didn’t have registration badges to get in), and very separate from where the HCPs were talking about … well … talking about us.

Twelve months later EASD moved to Munich. This time, Bastian had managed to negotiate with the event organisers for a room at the conference centre. Most of the advocates who were there for other satellite events had secured registrations badges, and could easily access all spaces. Now, instead of needing to schlep across town to meet, we had a dedicated space for a couple of hours. It also means that HCPs could pop into the event in between sessions. And a few did!

This has been the model for #docday° at EASD and, more recently, ATTD as well. The meetups were held at the conference centre and each time the number of HCPs would grow. It worked! Until, of course COVID threw a spanner in all the diabetes conference works. And so, we moved online to virtual gatherings which turned out to be quite amazing as it opened up the floor to a lot of advocates who ordinarily might not be able to access the meetings in Europe.

And that brings us to this year. The first large international diabetes conference was back on – after a couple of reschedules and location changes. And with it would, of course, be the global #dedoc° community, but this time, rather than a satellite or adjacent session, it would be part of the scientific program. There on the website was the first ever #dedoc° symposium. This was (is!) HUGE! It marks a real change in how and where people with diabetes, our stories and our position is considered at what has in the past been the domain of health professionals and researchers.

When you live by the motto ‘Nothing about us without us’ this is a very comfortable place to be. Bastian and the #dedoc° team and supporters had moved the needle, and shown that people with diabetes can be incorporated into these conferences with ease. The program for the session was determined by what have been key discussions in the diabetes community for some time: access, stigma and DIY technologies. And guess what? Those very topics were also mentioned by HCPs in other sessions.

There have been well over a dozen #docday° events now. There has been conversation after conversation after conversation about how to better include people with diabetes in these sorts of events in a meaningful way. There has been community working together to make it happen. And here we are.

For the record, the room was full to overflowing. And the vast majority of the people there were not people with diabetes. Healthcare professionals and researchers made the conscious decision to walk into Hall 118 at 3pm on Wednesday 27 April to hear from the diabetes community; to learn from the diabetes community.

If you missed it, here it is! The other amazing thing about this Symposium was that, unlike all other sessions, it wasn’t only open to people who had registered for ATTD. It was live streamed across #dedoc° socials and is available now for anyone to watch on demand. So, watch now! It was such an honour to be asked to moderate this session and to be able to present the three incredibly speakers from the diabetes community. Right where they – where we – belong.

DISCLOSURE

My flights and accommodation have been covered by #dedoc°, where I have been an advisor for a number of years, and am now working with them as Head of Advocacy. 

Thanks to ATTD for providing me with a press pass to attend the conference.

I’ve always thought that being pushed out of my comfort zone is a good thing. There’s something to be said about feeling uncomfortable and being stretched outside the boundaries of familiarity. 

And so, with that in mind, I jumped on a plane and flew to Barcelona for ATTD. If you read my last post, you’ll know it was nowhere near as easy and flippant as that last sentence sounds. 

A lot of the stresses I had before I left ended up amounting to nothing. There were no endless queues at the airport, or crowds who didn’t understand keeping 1.5 metres apart. Almost everyone was wearing a mask. Security was even more of a breeze than usual (apparently laptops and other devices don’t need to be removed from carry-on luggage anymore), and, requesting a pat down rather than walking through the full body scanner was met with a nod and a smile.

Everyone wore masks boarding the plane and most seemed to leave them on throughout the flight. This isn’t something to treat lightly. The first flight alone was almost 15 hours long! My mask was removed only while drinking and eating, staying on snugly while I slept. 

While there were no formal requirements for a supervised COVID test to enter Spain or return to Australia, my daily tests did cause 15 mins of countdown anxiety. One evening, someone messaged me to tell me that she had tested positive. We’d had a breakfast meeting the previous morning. I calmed my initial response (which was to freak out and burst into tears) by remembering that we’d all been masked up apart from the minutes we were eating.

When I arrived in Barcelona, I had been cautioned of convoluted arrival procedures and extra queues to check health and vaccination status. Before leaving, I’d had warnings and reminders from the airline and friends already there to make sure I’d completed my online Spain Travel Pass because the QR code would be needed. Except, it wasn’t. Passport control took under than 90 seconds. And my code wouldn’t scan for the woman checking my pass. ‘Where are you from,’ she asked me. When I said Australia, she laughed and told me just to go get my bag. (Clearly, she wasn’t up to date with our COVID numbers…)

Luckily, the people I spent most of my time with were all on the same page as me when it came to masking. We were not the norm. Most people were not masked up. I realised that when I walked into a hotel restaurant to meet someone a couple of hours after I arrived, and again as I walked into the conference centre on the Wednesday afternoon. As I stood on the stage to welcome everyone to the #dedoc° symposium, I was grateful to be greeted by a sea of masks with fewer than ten people in the packed crowd choosing to not wear one. And a couple of them searched in their bags for one after I and first speaker, Dana Lewis, thanked people for masking up. 

I have to say it did surprise me to see so few healthcare professionals wearing masks, and eagerly reaching out to hug or shake hands when we met. I actually was okay with giving people I know a hug, but we always asked first. I adopted a weird kind of hopping around to avoid people I don’t know too well as they approached, instead extending my elbow. 

I went into last week with a very clear idea of how I was going to, at all costs, avoid people. I’ve held tightly onto health measures (masking, distance, lots of hand washing, meeting people outdoors) since the pandemic began, and there was no way I was going to be partying like it was Feb 2020 just because I was back in Spain. 

But there was a moment that I did throw a little caution to the wind. The evening I arrived, after my first meeting, I got in the elevator to the rooftop of the hotel where I was staying. It was the same place all the #dedoc° voices were, and they were having an informal meet up on the roof. I walked out, and a few of them – the ones I know well – screamed and charged at me. And instead of freezing and freaking out, I teared up and was happy to just be enveloped by them all. I was wearing a mask and, in that moment, that as enough. 

Since I have returned home, I’ve been asked dozens of times what it’s like travelling and being at a conference again and how I coped. The answer isn’t straight forward. 

Travelling again was terrifying. I didn’t enjoy being in transit at all. I struggled with there being so many people around me. And I was uncomfortable with the unpredictability of the whole situation. But I focused on the bits I could control and did my best to just deal with it. 

Being at a face-to-face diabetes conference was in equal measure exhilarating and difficult. Being able to have in real life conversations with people about their advocacy and how they have been going is different to messaging or Zooming – it just is. Bumping into people in conference centre hallways starts conversations that absolutely wouldn’t have happened otherwise. And it’s those conversations that often lead to collaborations and new projects. I predicted in my last post that the muscle memory of a real-life conference would return without much effort, and I was right. 

The equation for me is this: the good outweighed the bad. The moments of joy and delight dwarfed the moments of terror. The feeling of being part of something – that truly global diabetes community of truly incredible diabetes advocates and healthcare professionals and researchers – returned with a fierceness I wasn’t expecting. I felt at home and where I belonged, and the moments of anxiety – sometimes almost paralysing – were overcome by knowing that. And the peer support was immense. I didn’t realise just how much I needed that contact again.

I’m not going to be rushing back to the same conference and travel schedule I had built in 2019 – it’s not sustainable in so many ways. And there is a lot of risk assessment going on. I won’t be at ADA this year, but EASD is on the cards. Carefully chosen meetings with clear goals and plans are worthwhile.

The world is definitely a different place. But within those differences is the comfort of knowing that the diabetes world – the diabetes advocacy community – has absolutely not stopped doing what it does best. As I stood in corridors speaking with people and plotting and planning, or took the stage to chair a session, or caught up with people after hours on rooftops, I realised that it’s going to take a lot more than a global pandemic to stop the passion and dedication and determination of those who have one thing in mind and one thing in common: improving lives of people with diabetes.

DISCLOSURE

My flights and accommodation have been covered by #dedoc°, where I have been an advisor for a number of years, and am no working with them as Head of Advocacy. 

Thanks to ATTD for providing me with a press pass to attend the conference.

Before the world changed, I was in Qantas’ top five per cent of travellers. They told me this in an email, as though it was worth celebrating – they actually used the word ‘congratulations’ in the opening paragraph. To me, it just represented all the time I spent on aeroplanes. In 2019, I did ten long-haul flights for work and one for pleasure. I couldn’t tell you how many domestic flights I took but suspect it would be close to fifty. I had a tally at one point of the number of airbridges I’d walked but stopped counting when I got to 100 because I was feeling sad about it. 2020 was shaping up to be the same, but then that global pandemic thing happened and grounded pretty much all flights in and out of Australia. And me along with them. 

But before then, I was what you would call a seasoned traveller. I could pack in ten minutes, while going through my mental checklist to make sure I had all the diabetes supplies I’d require, as well as regular-people things. I was brilliant at calculating future time zone gymnastics so I wouldn’t find myself woken at 3am with an expired sensor or empty pump reservoir. 

I had my airport routines timed down to the minute. I knew I needed a cab at my house exactly 60 minutes before a domestic flight. That would give me enough time to breeze through the express security aisles, walk straight into the Qantas Business Lounge, order a takeaway coffee, walk to the gate, and get on the plane, just in time to watch the Qantas safety video that (lied) told me there was good coffee onboard. 

International flights needed a little extra time. I’d arrive at the airport no more than 90 minutes before flight time. Speed through the First Class check in (no, I was not flying first class, but Platinum status – thanks to all the flying – meant I was treated as though I was. At least until I boarded the flight!), dive for the shortest e-passport queue and speed-walk through duty free and find a window seat in the First Class lounge and wait for my flight to be called. 

I was that person at the airport who could tell which queues were moving quickest, understood that unpacking laptops/phones/removing jewellery PRIOR to getting to the front of the queue kept things moving, knew the best seats in the lounge, was recognised by lounge staff (the Qantas Business domestic lounge baristas knew my coffee order; I could easily get a pre-flight massage in the international lounge). Flying was tedious, tiresome, and far too frequent, but I had it worked out.

Right now, I’m at the airport, about to board an international flight for the first time since I returned home from ATTD in Madrid in February 2020. Getting to this point has been stressful. 

I’m terrified of people and I’m guessing there will be some on the plane with me. I don’t like my new passport photo. I’m beyond terrified at the thought of being away from home. I’m scared about getting COVID and not being able to return home. I’m confused about COVID requirements. I’m concerned about diabetes being a shit while in transit, even though that’s really not something I’ve had to contend with in the past. I’ve been worried all week that I’ve forgotten how to travel!

It took me forever to work out what to pack. I checked, double checked and triple checked diabetes supplies, packing them, and then unpacking them over and over. I couldn’t work out which charging adaptors I needed. I finally shut my suitcase, (after spending an age deciding just the right one to use), which I know has far too many changes of clothes, but I’ve lost the knack of throwing together a ‘conference capsule’ of just the right things to wear for just the right number of days. 

I couldn’t remember the layout of the airport – I walked by the elevator for the lounge and somehow found myself at a deserted part of the airport before I realised I was lost. I was worried about crazy-long airport queues but was pleasantly surprised at the efficiency of the whole check in process, so probably didn’t need the extra hour I gave myself to make sure I wasn’t running late.  

I feel like one of those people at airports who holds up everyone else because they don’t know when to have their passport ready and open at the right page, or their shoes off, or to unload everything from their pockets before going through the scanner. You know, one of those people that used to drive me to despair back before the world changed. 

As it turns out, the whole process of getting through security and passport control was effortless. My pump, CGM and OrangeLink were barely noted during the security pat-down. The only difference with 2022 travel as compared with 2020 travel is that I’m sporting a pink mask and had to show my vaccination certificate. I walked into the Qantas Lounge and was greeted with a ‘Welcome back’, and I nearly burst into tears. 

I can see my plane out the window from the lounge (I still remembered where the best seats are!) and have had my last Melbourne coffee for a week. I managed to deal with a little hypo (thanks to all the extra steps from getting lost!) without too much drama. It all feels oddly familiar and completely alien at the same time. 

In just over 25 hours, I’ll be in Barcelona. A real life conference seems so strange still, but I have a feeling that muscle memory is going to be strong there, and being around an incredible network of diabetes advocates (follow the #dedoc° voices!) is going to be an endless source of support and inspiration. Through it all – the anxiety and the stress of getting to this point – I’m so excited! Let’s see what ATTD 2022 has in store!

New passport!

DISCLOSURE

My flights and accommodation have been covered by #dedoc, where I have been an advisor for a number of years, and am no working with them as Head of Advocacy.

Thanks to ATTD for providing me with a press pass to attend the conference.

What were you doing 15 years or so ago? I can’t tell you what I was doing at exactly this moment back then, but I can tell you that it is when I started working on getting CGM access for all Australians with type 1 diabetes. Back then, CGM was relatively new here. It was only used by people with type 1 diabetes and, just as now, the out-of-pocket expenses were significant. But, we knew that there was emerging evidence to show that this tech was life-changing, and we knew that there was no time like right then to start discussions about what a funding scheme would look like. 

When I talk about the slow burn of diabetes advocacy, this is what I mean. We’ve had wins along the way, but until this morning, it’s understandable that a lot of adults with type 1 diabetes felt quite forgotten with the subsidies that were available.  

But today we’re celebrating. In a big way. We started working on the announcement yesterday when we heard that there would be an announcement today – #CGM4All was moving from just being a hashtag to a reality if the Coalition was returned to government. Within hours of this morning’s announcement, the ALP said they would match that promise. 

Isn’t bipartisanship a beautiful word?

Breaking it down, what does this mean? It means that nothing changes for people who already have access to fully-subsidised CGM and Flash GM through the NDSS CGM Initiative. For those of us who have missed out up until now, the Initiative will be expanded; we will have access to the scheme, and there will be a co-pay. Details are sketchy around that, but the announcement is that the maximum out-of-pocket expense will be $32.50 per month. Right now, those on a subscription for Dexcom G6 would be paying $330 per month. 

So, this is a lot less!

By the way, we’ve been here before. Back in 2016, we had bipartisan support for introducing CGM funding. At the time, the ALP promised funding for all people with type 1 diabetes who met the criteria which was firmly based on clinical need. The Coalition’s promise was for kids, which is exactly what happened when the first iteration of the NDSS GCM initiative became a reality in April 2017. There have been further expansions – for people with diabetes planning for pregnancy and while pregnant, and for those holding a healthcare card. But not for everyone

Back to those first meetings fifteen years ago – this was the dream. #CGM4All. 

With my Diabetes Australia hat on, I can say I am incredibly proud of our advocacy work. I look to the dedicated people who I’ve sat in meeting after meeting after meeting with, modelling different scenarios, workshopping proposals, celebrating the wins, and commiserating the frustrations. 

And with my person with diabetes hat on, I can say that alongside the tears of joy I shed this morning when the bipartisan support was announced, there was relief and gratitude. 

#CGM4All people with type 1 diabetes.  Oh, happy day!

Comment: there are definitely others with diabetes who benefit from CGM technologies. I’m not done until access is equitable. Today I’m celebrating. But then…then it‘s back on the advocacy trail looking at how to support other cohorts. 

Disclosure

I am the Head of Communities and International Affairs at Diabetes Australia. 

Just a few weeks ago, this happened:

Because, for some people, seeing a stranger ‘doing diabetes’ is all it takes to jump right on in and offer a piece of wisdom, when really, the right thing to do is simply look away and say nothing. My response is generally quite brusque, leaving no room for misinterpreting my complete and utter lack of interest in furthering the conversation. 

That experience, along with another intrusion from a stranger yesterday had me wondering why some folks think it’s fine to be so insensitive, and curious about how other people deal with this sort of crap.

Somewhat serendipitously, I stumbled across Up To Us, an art exhibition which is ‘Bringing women together to design the world we want’. The works I’ve already seen shared online all look great – centring women in a way that brings awareness to issues and problems that are relevant to women. But it was the artwork contributed by Unsolicited Advice Project that grabbed my attention. I mean, look at this!

The Unsolicited Advice Project is the creative brainchild of two Australian artists. Their website explains their work like this:

As chronically ill and disabled people, we receive a lot of unsolicited advice. We know people mean well, but it often feels dismissive, unproductive and condescending. There are ways to have more productive and empathetic conversations, and they probably look different for everybody. 

Oh, but isn’t that right?!

You can read all about the The Unsolicited Advice Project here and follow on Instagram here. There is an absolutely hilarious Instagram stories ‘unsolicited advice generator’ effect that you can have a play with too, which churns out advice that is representative of the sort of ‘Have you tried…?’ rubbish that people like to offer.

I’ve taken to stopping people as soon as they utter the three words: ‘Have you tried…?’ because their offerings will be from one of two camps. 1. Something I know about and am possibly already doing; or 2. A meme from Dr Oz Mehmet or Dr Mark Hyman or it involves some ‘wellness hack’ that I have absolutely no interest in hearing about. 

I love what The Unsolicited Advice Project is. I love the way it is using art as advocacy to highlight an issue that so many people with chronic health conditions face frequently and which often adds am additional burden to just getting on with our lives. I love that as people walk through the exhibition and see this, they start to understand how unwelcome many people find this sort of unwanted and uncalled for advice. I love how this might make people think twice about diabetesplaining the health condition I self-manage and inevitably know more about than they do. I love that it might discourage people from seeing diabetes as something for which there is a quick fix.

And I love the idea of this as a conversation starter for the broader community about how to engage people with chronic health conditions or disabilities in ways that generate respect, and are led by the community. 

As if to prove the point of yesterday’s post, I’ve received dozens of lovely messages from people about how supportive they’ve found others with diabetes, and how building each other up is a cornerstone of the work they are involved in.  

And as someone said to me today when I told them how many people had reached out: ‘I’m not surprised …’

Neither am I. That community support is on show everywhere you look right now. And no more so than with community efforts to support our diabetes brothers and sisters affected by the war in Ukraine. 

Click to donate

#SpareaRose for Ukraine has now been running for about two and a half weeks. Over $115,000 has been raised in community donations, plus another $80,000 or so in corporate matching. Just a reminder: this is a community initiative. There are four people doing a few things behind the scenes, but really, it’s the community that drives this campaign each and every year – BY the community, FOR the community. 

The Dedoc voices community, a group of people with diabetes, has been instrumental in sharing details of #SpareARose for Ukraine once it had been launched. They have also been sharing other extraordinary efforts they’ve been involved in, and here are just some of them. 

Meet: Dawn

Dedoc voice from Northern Ireland, and diabetes advocate extraordinaire, Dawn has been working with a group of people in NI, collecting support and supplies from the community to be packaged up and sent on to people with diabetes affected by the war.  

We have been given disposable and reusable pens, more than 5000 units of insulin in cartridges and vials, glucometers, test strips, glucagon, hypo treats, pen needles, pump supplies for Medtronic and AccuChek pumps, and lancets galore. 

We’ve also had a donation of disposable pens from women with GDM who have had their babies. The support and generosity has been truly phenomenal. Two of us took the items we had to a diabuddy for collection by Ukrainian Doctors. These Doctors have also been given an ambulance to take into Poland and were also guaranteed transport for supplies by RyanAir into Poland more details about the medical team can be found here 

If you would like to help, there is a go fund me page which you can access by clicking here.

(I can only imagine the supply of lancets are for a joke?)

Meet: Weronika

You may know Weronika better as Blue Sugar Cube on Insta and Twitter and seen her gorgeous artwork. She is a dedoc voice and an advocate from Poland, living in Belgium. 

Weronika shared with me what she has been doing in what can only be described as a community AND family effort!

Together with Polish Diabetes Association, I organized a collection of diabetes supplies in Belgium for Ukrainian PWD.

Of course, the diabetes community didn’t disappoint, and many people instantly wanted to help. It took only 5 days to fill two huge boxes of glucose meters, test strips, insulin pens and needles, insulin pump equipment, sensors, and hypo snacks!

My dear husband helped me sort and pack everything. We already sent the two boxes to Poland via a driver who was so noble to take them to Poland for free.

All diabetes articles will be delivered to the Headquarters of the Polish Diabetes Association in Warsaw (with the help of my in-laws) from where they will be distributed as needed.

Packages are still arriving, and we are organizing the next shipment soon…

Meet: Caro

Caro has been a dedoc voice at a number of conferences now, and is a terrific advocate for technology use for people with diabetes. Here is what she has been doing in Germany.

At our looper meet up with PWD from around the city of Cologne, we collected supplies for people in Ukraine. As we have a Russian member who has Ukrainian friends, the motivation to support was even bigger. These personal contacts and their reports about the situation in Ukraine make us sad and stunned. 

Another member of our group had connections to an organisation from Düsseldorf – they get trucks to Ukraine (even equipped with a fridge and able to cool insulin and other medical equipment).

Third way we support the Ukraine was to send insulin to the country via the organisation ‘Insulin zum Leben’ (the German Insulin for Life affiliate) which we are supporting already for many years. 

At this meet up we collected all stuff we knew that could be needed, sorted it, labelled and packed it. Insulin, test trips, cannulas, USB charger, Hypo snacks, dressing materials, painkiller etc. We all know, supporting via the official organisations is the best way to support – and we do that.

Meet: Ineska

As well as being involved in dedoc voices, Ineska from Croatia is an IDF YLD and part of the Type1EU community. Together with the Zagreb Diabetes Association she has alerted Croatian Red Cross, Ukraine embassy in Zagreb and pharmacies across Croatia to reach out of people from Ukraine who had come into Croatia, so they can be provided with help. 

Ineska shared some examples of the help that’s been requested:

Firstly, we got a call from Croatian policeman who was going to pick some kids and mothers on a border of Ukraine. He told us that he got a request from the Red for diabetes equipment of any kind, but specially insulin. We collected supplies within 3 hours with our diabuddies!

Then yesterday we got a call from Croatian Red Cross that they have a girl with diabetes, and she needs pump materials.

Also, we got a call from pharmacy that someone from Ukraine is asking to buy diabetes equipment, also for pump, but they can’t give it to them, because they need to have a prescription. 

So, at the end we got so many calls, and this is only in ‘small’ country of Croatia. We are so glad, that with this one step we could help so much.

There are others in the dedoc voices chat that are sharing their stories of community efforts they are involved in. Leon from Australia is providing frequent updates from Medicines Sans Frontieres and sharing relevant links to different aid groups. Others are asking for contacts in different countries to pass on urgent messages. As always, the group is coming together to support each other with the aim of helping others with diabetes who are facing impossible challenges right now. 

In yesterday’s post, I wrote about the community supports and looks out for each other. Spare a Rose is a great example of that. For ten years, people from all corners of the diabetes community have made it their own. It’s not about supporting the volunteers behind the scenes. It’s about doing a huge thing and supporting others with diabetes. Together. Because that’s what a community does. 

You can still apply for to join the #dedoc° voices program at the upcoming ATTD conference. But be quick as applications close on 20 March. Click on the image below to be taken to the application form.

Disclaimer

I am an advisor to the #dedoc° voices program. I do not receive any payment for this role.

Sometimes it takes me a couple of days after a big diabetes meeting or event to work out my main takeaways. I think about it and throw things around, reliving certain aspects, considering what was discussed, carefully thinking about all possible interpretations to make sure that I am clear about what people were saying

I didn’t need time after last week’s World Health Organisation Focus Group on Advancing the Lived Experience of People Living with Diabetes because the takeaways were there straight away, loud and clear. 

There were three things for me:

  1. The acknowledgement about the importance of language and communication. I wrote about that the other day
  2. Barriers to access include far more than affordability. Affordability is absolutely a cornerstone of being able to get the best care, take the right meds and use the right technology, but there are a lot of other obstacles and blocks that impact on outcomes. More on this another time. 
  3. But, for me, THE biggest take away was the support that was overflowing from most people in attendance, and they way they were looking out for each other, looking to each other, and looking for ways to remain connected to support the astonishing work being done in the community – from grassroots initiatives, right through to involvement in political campaigns at the highest organisation level.  

I have been so lucky to be the recipient of that sort of support from other people with diabetes over the years. Whether it’s invitations to be involved in their projects, or having an EOI flyer flicked my way, or being recommended for something, the love and generosity of others with diabetes has certainly opened up a lot of advocacy opportunities. I have tried to pay it back, and, (to use a #dedoc° voices motto), #PayItForward as well. A benefit of working for a diabetes organisation has meant that I have been able to co-design and develop programs to involve others. Initiatives like the #DAPeopleVoice and countless speaking occasions, and nominating people for initiatives such as the IDF YLD have opened the door for others with diabetes to step through and find a platform for their own advocacy. 

One of the things that I learnt early on is that there is a lot of stuff to go around. If people want to get involved, there are always ways in. Chelcie Rice’s ‘If they don’t have a chair for you, bring your own’ words ring in my ears a lot when I think about making sure PWD have a seat at the table, and I’ve extended that to ‘And make sure you bring a chair for someone else, or give yours up for them’. Increasingly, I’ve done more of the latter.   

Also early on I learnt to ignore the people who did nothing more than complain about who gets invited where, instead understanding my own value and reason for being involved, while also making sure to find a way to bring along those who genuinely were interested in being included and were willing to work to make it happen. (The incredible responses to this tweet show how people got a break in diabetes advocacy and what it’s taken to keep going.)

Supporting others is as easy as sharing someone’s blog or social media posts, linking to them here in my own writing or to their Twitter handle when I mention them, celebrating their work to others and applauding their wins. 

Attitudes of support were demonstrated in spades last week. I had direct messages from dozens of attendees, some reaching out for the first time, that were just so damn encouraging and kind. 

At the same time, I was frantically messaging others to ask about their work and if there was anything I could do to promote it. I sent the #dedoc° voices application link to a number of people who were at their first advocacy meet, and hoped to do more. 

One of the nicest messages I received was from someone I’ve known for years on Twitter, but never actually been at the same event or involved in the same project. We exchanged some lovely messages, acknowledging how terrific it was to finally find ourselves in the same Zoom room, and a hope that it would continue. 

The overwhelming openness, kindness and consideration of others was disarming. There wasn’t a sense of competition or resentment for anyone doing other things. There was appreciation and respect of others’ efforts. And that led to meetings being set up, collaborations taking shape, and a list of exciting new things to check out and share. 

Look, if this seems all a little utopian, maybe it is, and maybe I sound annoyingly Pollyanna-ish. I’m sure that there were some folks there who walked away with a very different vibe. And that’s fine. Not everything floats everyone’s boat. Perhaps not everyone connected with others the same way I did. Perhaps they weren’t as comfortable reaching out to others to offer their support, or maybe they didn’t see or hear anything they thought worth supporting. As always, diabetes experiences – whether in a clinic appointment or an advocacy event – will be different for different people. 

For me, I started from a place of wanting to be there and wanting to connect with others. When I think about it, there is an element of selfishness in my advocacy work, as it’s allowed me to always find a way to connect with others with diabetes, to learn from them, to work together, to jointly elevate our place in the diabetes healthcare space. It’s served me well. And it’s given me the change to receive and give support to others, too. It’s a good place to start. And it’s a good thing to keep doing.

This. On a tee-shirt, please.

DISCLOSURE

I was invited by the WHO Global Diabetes Compact team to be part of the facilitators at the Focus Group on Advancing the Lived Experience of People Living with Diabetes. I happily volunteered my time. 

Advocacy is a slow burn. I say those words every day. Usually multiple times. I say it to people with diabetes who are interested in getting into advocacy, not to scare them off, but so they understand that things take time. I say it to established advocates. I say it to people I work with. I say it to people in the diabetes world who want to know why it takes so long for change to happen. I say it to healthcare professionals I’m working with to change policy. I mutter it to myself as a mantra.

Slow. Burn.

But then, there are moments where there is an ignition, and you realise that the slow burn is moving from being nothing more than smouldering embers into something more. And when that happens I can’t wipe the smile of my face and I start jumping up and down. Which is what I was doing in my study at home at 2am, desperately trying to make as little noise as possible so as not to wake my husband and daughter who were sounds asleep in other rooms off the corridor. 

The World Health Organisation conducted the first of its two focus group sessions for people with diabetes yesterday (or rather for me, early this morning), and I was honoured to be part of the facilitating team for this event. In the planning for the questions that would be discussed in the small break out groups, the WHO team had gone to great pains to workshop the language in the questions so they were presented in a way that would encourage the most discussion possible.  That was the start of those embers being stoked.

I think that the attention to how we framed the discussion points meant that people thought about their responses differently. 

The topics last night were about barriers to access of essential diabetes drugs, healthcare and technology. Of course, issues including affordability, health professional workforce, ongoing training and education were highlighted. These are often the most significant barrier that needs to be addressed.

But the discussion went beyond this, and time and time again, people identified stigma and misconceptions about diabetes as a significant barrier to people not being able to get the best for their diabetes. It certainly wasn’t me who mentioned language (at least not first), but communication and language were highlighted as points contributing to that stigma.

This recurring theme came from people from across the globe. It was mentioned as a reason for social exclusion as well as workplace discrimination. There was acknowledgement that perceptions of diabetes as being all about personal responsibility has affected how policy makers as well as community responds to diabetes – how serious they see the condition. 

In the discussion about diabetes-related complications, the overall language had been changed from ‘prevention’ to ‘risk reduction’ and this was recognised in many of the discussions as a far better way to frame conversations and education about complications. This isn’t new – it was a recurring theme when a focus in the DOC was the hashtag #TalkAboutComplications. I wrote and co-wrote several articles about it, including this piece I co-authored with the Grumpy Pumper for BMJ

The direction the discussions took were a revelation. No. It was a revolution!

So often at other events and in online debates when language and communication has been raised, conversation has been stalled by people pushing agendas about wanting to be called ‘diabetic’, as if this is the first and only issue that needs to be resolved. That didn’t even come up last night because the people who were highlighting the implications of language understood that when you look at the issues strategically and at a higher level, those details are not what matters. 

What matters is looking at Communication with a capital C and understanding its influence. It elevated the discussion so far above the ‘it’s political correctness and nothing more’ that it would have been ridiculous to drag the discussion back to that level. 

For years, there has been push back regarding communication because people have not stood back and looked at impact. That has changed.

When I wrote this four years ago highlighting that diabetes’ image problem diabetes – all those misconceptions and wrong ideas about the condition – has led to fewer research dollars, less understanding and compassion from the community, more blame and shame levelled at individuals … it was to emphasise that the repercussions have been significant. 

Thankfully as more people started stepping back and considering big picture – health systems, policy, community education – I could see that there were shifts as some people stopped talking about political correctness and started asking what needed to be done to really move the needle. It seems that’s where the very, vast majority of people were during the WHO focus group 

This diabetes #LanguageMatters movement stands on the shoulders not of the people who have elevated the issue in the last ten years (although those contributions have been massive!) or the position papers and guidelines that have been published (although those have certainly aided the discussion in research and HCP spaces), but rather, the people in the diabetes community who, for years, knew that language and communication was a driving factor in our care. People like those in the (Zoom) room yesterday.

Looking for more on #LanguageMatters

Click here for a collection of posts on Diabetogenic.

The Diabetes Australia Language Position Statement (Disclosure: I work at Diabetes Australia and am a co-author on this statement.)

The Diabetes Language Matters website which brings together much of the work that has been done globally on this issue. (Shout out to diabetes advocate Jazz Sethi for her work on this.)

DISCLOSURE

I was invited by the WHO Global Diabetes Compact team to be part of the facilitators at the Focus Group on Advancing the Lived Experience of People Living with Diabetes. I am happily volunteering my time. 

It’s International Women’s Day and I want to it yell from the rooftops and celebrate the incredible women diabetes advocates who continue to lead and chart paths that are pioneering and innovative. But in equal measure, I want to crawl into a cave and return out of it once the performative platitudes are over.

And yet, I can’t go without acknowledging it, because there is literally one day a year when women are centred and even then, we must defend our right to a day that highlights the centuries of systematic inequality that entrenched misogyny has afforded us, and answer the inevitable question: ‘WhY iSn’T thErE an InTerNaTiOnaL Men’S DaY?’ (There is. It’s in November. Put on your own morning tea.)

We’re seeing more and more women talk about how they feel targeted and unsafe in all spaces – on- and off- line. It’s not because this is suddenly ‘a thing’. Rather it’s becoming more acceptable to talk about it and to call it out.

Which is what I do. 

Last year, I wrote about an event I’d facilitated women and diabetes. When I linked to the post on twitter, I was accosted for my take which dared to suggest that misogyny contributes to so many women’s health issues being under researched and rarely discussed.  And then I was told off for not crediting the men who had discovered insulin.

Getting #NotAllMen’d and attempting to centre men on a post about the prejudice women experience in healthcare did drive home my point, but really, it was completely unnecessary. And downright exhausting too.

Also last year, in preparation for a presentation about diabetes and menopause, I asked the DOC if they routinely had discussions with healthcare professionals about menopause and diabetes. I had naively thought that it would start a conversation with women in the community. Instead, I had some bloke have a go at me for not promoting low carb diets and topped it all off with a demand that I don’t talk with my peers about menopause because I have no health professional training. 

Again, exhausting. But also, it’s just what women have come to expect. Being mansplained menopause or told that my own analysis of entrenched misogyny is wrong is simply part and parcel of being a woman who dares speak up. 

Most recently, I’ve been dealing with some pretty damn pathetic anonymous trolling which is hurtful and ludicrous. Someone is so unimpressed with me they have felt the need to repeatedly let me know and inform me it’s why they refuse to support Spare a Rose, and that I need to stop suggesting that it is the only way the diabetes community can help people with diabetes in Ukraine. I’ve checked. I’ve not said that. Not once. So I’m not sure why anyone is going out of the way to deliberately highlight that no one must support the campaign. It’s not lost on me that of the coordinating group of this community initiative, I am both the only woman and the only one being targeted. 

There is more to those messages though. There is also this: ‘You do nothing other than self-promote … and amplify yourself.’ I wonder how many men who share their work, tweet what they’re up to, feel proud of what they have achieved are accused of this. Because it has been a recurring theme throughout my career. That and being called words like strident, and being told that I should be reined in.  

I don’t feel special here. There are many women who have had similar experiences. I could have just ignored those messages, or stewed away quietly. But I have chosen to share them and I do so knowing there is a snowball effect in play.  Undeniably, it’s easier to pop your head above the parapet when you know there are others out there too. When we recognise our own difficult experiences bravely shared by others, we find it easier to bravely step up too.

I know this, because I spend a lot of time reaching out to thank women who have shared their story. And every single time I’ve ventured to share the gendered crap I’ve dealt with, I’ve had dozens of women send me a DM to tell me their experience is similar. Sometimes, we privately share who is the behind our experience, and it is remarkable just how often the same names come up. And it is also remarkable just how often those men claim to be allies. Those same men who can’t help but refer to people like me as angry women. Is it important for them to point out my gender when they’re having a go? Apparently, yes.

I am more than happy to be called an angry woman, a strident woman, an irate feminist. I will wear those labels as badges of honour. Because I know this: If you see and hear woman calling out the crap and respond by calling us angry women, you have played your cards and they show us that you are a misogynist. You are showing how you can’t handle strong women. And you are speaking when you should be listening.

In case you can’t zoom in to read the caption on my tee, it says ‘Don’t be a lady, Be a legend’.

There are some far more celebratory IWD posts on diabetogenic, and I encourage you to read them because the women acknowledged deserve the recognition. 

Read this one.

And this one.

And this one.

Follow Diabetogenic on WordPress.com

Enter your email address to follow this blog and receive notifications of new posts by email.

Read about Renza

This website is certified by Health On the Net Foundation. Click to verify. This site complies with the HONcode standard for trustworthy health information:
verify here.

Archives

Twitter

%d bloggers like this: