Interweb jumble #41 – highs and big decisions

When I look back over 2022, it’s been a year of remarkable highs. From improved access to diabetes tech in Australia, extraordinary community alliances for initiatives such as spare a rose for Ukraine, and community-based activities reaching new heights, I feel that I can say goodbye to the year feeling that big things happened! And so, a little Interweb Jumble of this year’s highs. As well as some endings and new beginnings…

Tech access in Australia

After almost fifteen years of advocacy, Australians could celebrate with the introduction of CGM for all people with type 1 diabetes in what must be one of the most equal and simple access programs around the world. I’ve written before about the hoops required PWD need to jump through to get access to tech – even when it should be simple. With the NDSS CGM Initiative, there is one hoop and one hoop only – a form signed, and signed once only, by an HCP. 

As if that wasn’t enough, some sort of miracle occurred, and Omnipod was added to the NDSS. I have been involved in discussions about Omnipod for well over a decade now, trying to massage models of access to fit a system that simply didn’t comply. Congrats to the Omnipod Australia team, and truly remarkable community engagement to make funded Omnipod a reality for Australians with type 1 diabetes. 

These celebrations are all worthy, but it’s always worth remembering that there are still huge numbers of people with diabetes who would benefit from tech and are not eligible. Those cohorts need advocacy and community support to make it a reality, and I can’t wait to see just how that all rolls out – hopefully sooner rather than later. 

And now we turn to NZ…

Great to see efforts increasing in New Zealand so our friends across the Tasman have access to funded CGM. Just before I flew to New York, I presented (virtually) at the ‘Transforming Lives: 100 Years of Insulin’ event held in New Zealand Parliament about community, grassroots and organisation advocacy to make the dream a reality. 

#LanguageMatters keeps going from strength to strength. 

The language matters movement has continued to grow, with new statements and documents launched across the world. I spoke at so many different events and webinars about language and communication and how to do better. Every little improvement, every little step towards reducing stigma is a step in the right direction. 

The Diabetes Language Matters website is a brilliant resource that pulls together what’s going on around the world in one place. Massive kudos to Jazz Sethi for coordinating this work and keeping it updated – which is more than impressive when you consider just how far reaching the movement is now!

Ah, so that’s what you look like in real life?

As the world opened up again, and international travel slowly returned, face-face conferences started up again. It was with a mixture of fear, anxiety, and excitement that I jumped on a plane for my first international flight after a long time to chair the first ever lived experience symposium at ATTD. What a treat to be back around peers with diabetes who I’d only seen through Zoom screens for well over two years. I was just thrilled people recognised me without the rainbow bookshelf as my background.

#dedoc° spearheads lived experience presence at diabetes conferences

The #dedoc° voices program meant that most diabetes conferences had a visible, vocal, and very real lived experience presence not only roaming the corridors, but also on stages, in meetings and across social media more than ever before. It was truly remarkable to see people from across Europe, Asia, Africa the US, and Australia dominating social media leader boards, and building networks for collaborations, many of which are already delivering. See the #dedoc° website for more.

By the community for the community

Spare a Rose returned this year with a new name (Spare a Rose, Save a Life) and a new charity partner. And once again, we saw people with diabetes dig deep and jump on board to be part of the campaign. With war breaking out in Ukraine at the end of Feb, the SaR team pivoted quickly and literally overnight with a new, refocused operation to support people with diabetes affected by the war. Over $400,000 was raised by the community, all through social media promotion, and so, so many with diabetes doing the right thing and getting behind it. 

And over November, #dedoc° led the charge for another community campaign – the Blue Balloon Challenge, which resulted in €100,000 donation from Medtronic to Life for a Child. If you want to see how amazing the community can be, all you need to do is see the hundreds of social media posts featuring blue balloons. It also is a great way to flag people who are doing things for others, uniting the community. Want to know who to follow? Follow those supporting community campaigns. 

New communities

I know I have written about the weekly Diabetes Chat before, but I’m going to do it again, because any initiative that is welcoming, inclusive and fun for people across the community deserves a mention. You just need to see how diverse the weekly participants are to know the agenda set by Tom Dean and others behind the scenes – and that agenda is to create a safe space for all. I was beyond thrilled to be asked to speak at one of the first Spaces events, and even more thrilled to meet Tom in person at the #dedoc° symposium at ATTD. I know a number of people who said that they returned to participate in DOC discussions because of the weekly Spaces Chat. How special is that? Details on the Diabetes Chat website.

Global happenings

The WHO Global Diabetes Compact Forum has continued this year, ending on a high with the team publication of an article about language. It’s really worth commending the WHO for the way they responded to earlier criticisms about diabetes comms. They listened and engaged the community and this year for WDD, delivered a brilliant campaign, and hosted a terrific Spaces event they kindly invited me to be part of. I feel really lucky to know James and the WHO team working in the area of diabetes and know that they are just warming up!

IDF Congress

The conference year ended with the IDF Congress in Lisbon, which saw the Young Leaders in Diabetes Program return to the force it once was with some of the most incredibly young advocates I’ve ever had the pleasure of meeting. I can’t wait to see what they get up to!

The greatest honour …

The high to end all highs for me professionally this year was giving the Living with Diabetes Stream Award Lecture at IDF and I was so pleased to be able to use the lecture to recognise the importance of lived experience, and share how #NothingAboutUsWithoutUs became the basis of my own advocacy.

But it wasn’t only those with lived experience that I acknowledged in my lecture. I took the opportunity of standing at the lectern in Lisbon recognising the incredible allies who have supported me, and others. I started with Greg Johnson, CEO of Diabetes Vic and then Diabetes Australia whose simple words ‘If we’re talking diabetes there must be people with diabetes in the room’ have resonated each and every day in my advocacy life. And then, I moved onto people like Jane Speight, Taryn Black, Partha Kar, Sof Andrikopolous, Nat Wischer, Tadej Battelino, Chantal Mathieu, Ann Morris, Marg McGill, and the late, great, and so, so missed Tricia Dunning, who have elevated the role of lived experience, making space on stages, handing over microphones and creating places so that people with diabetes are able to influence in real, meaningful and significant ways. It was an honour to look up and see many of those people in the audience.

… and a big decision 

In amongst all the highs, I decided it was time to make some big decisions. After twenty one years working in Australian diabetes organisations, I have decided that it is time for me to move on. Diabetes Australia has been my home for the last seven years, and Diabetes Vic (part of the Diabetes Australia family) launched my diabetes advocacy career fourteen years before that. My roles at both organisations have shaped my advocacy so much. They gave me a true understanding of the value of grassroots advocacy and just how vital community is in that advocacy. Greg’s words continue to ring in my ears, and I doubt there will ever be a time they don’t. And it’s those words that helped me make decisions about what I need to do next.

I walked into Diabetes Vic not knowing what diabetes advocacy was. I thought I’d spend six months doing the job while I worked out what I really wanted to do with my life after deciding that being a classically trained flute player really wasn’t it. 

As it turns out, diabetes advocacy and activism is what I wanted to do with my life for those six months, and the twenty plus years after that. And it’s what I want to keep doing now. In the new year, I’ll finish up at Diabetes Australia and then take on a role that will see me working beyond Australian borders, and, most excitedly, with a focus on community advocacy and engagement. I simply can’t wait.

But for now, I’m celebrating the big year that was in NYC for another couple of months, hugging my family, hoping for snow, visiting holiday markets, listening to jazz, and finding warm corners of historic hotels to write and drink tea. All while looking forward to bigger and brighter things to come.

DISCLOSURES:

I work for Diabetes Australia and have been involved in advocacy efforts for CGM for All.

I was invited by A/Prof Ben Wheeler from University of Otago and Te Whatu Ora Southern to speak at the New Zealand event about CGM funding and volunteered my time. 

I am Head of Advocacy for #dedoc°. Flights and accommodation for attendance at ATTD and EASD was covered by #dedoc°. Press passes were covered by the conference organising committees.

I am a volunteer for the Spare a Rose campaign. 

I am a co-author for the WHO journal article mentioned. I volunteered my time to be involved in this work. 

I was an invited speaker at the IDF Congress. I was also invited to speak at the Young Leaders in Diabetes Training Summit. I was not paid for my work with the group. Flights and accommodation were covered by the IDF.