Earlier this summer I was lucky to attend the biggest diabetes conference in the world in San Diego, California as a #dedoc voice. This post is a summary of my key highlights and reflections from the trip covering everything from conference comparison, hopeful science, new insights into the Medtronic 780G, #dedoc hot topics and advocacy fatigue.
ADA was very different from European conferences
This was my third conference in 9 months with #dedoc, coming on the back of #EASD2022 virtually and #ATTD2023 in Berlin, (you can read about them here and here). I was blown away by those conferences and very excited for what I thought would be the Coachella of diabetes.
When I arrived it was a bit of a culture shock. Lots of homeless people in downtown San Diego. Different crowd and vibe at the conference centre. Not many familiar faces from the European diabetes world. Enormous venue with a distinctly trade show atmosphere, product demos and stands for therapeutics and often little interest from those running them in engaging with people who weren't healthcare professionals.
While mingling around at the conference centre, the people who were most interested in speaking to me were the healthcare professionals attending the conference who noticed I was wearing the Medtronic 780G system (which had just been FDA approved) and wanted to know what I thought of it. I was happy to tell them!
The other thing I noticed was that the product demonstrations from the big diabetes tech names were packed out but the "research" focused sessions I went to were not very well attended. It felt like the conference was less about the research than the European conferences have been. This was a bit of a shame as I'd seen all the product demo stuff before a few months earlier in Berlin. I'd flown all this way - but would I learn anything new?
Should I be excited about Vertex?
One of the great things about being in San Diego was being able to meet US-based people from the diabetes world. I was very excited to meet up with Ginger Vieira for a waterside walk before the conference got into full swing. I've followed her for years and we're connected online so it was nice to have a chance to meet - and learn -from her.
On our walk Ginger told me about Vertex's clinical trials of lab grown beta cells. They hadn't been on my radar at all until that point. Ginger filled me in and was pretty excited about what Vertex are working on, which is to restore the ability to produce insulin in people with diabetes. Vertex has released some promising results using their treatment in a small number of people with diabetes but more work needs to be done.
My initial reaction to this was pretty neutral. I'm 16 years in to having type 1 and I've heard the "cure in 5 years" cynicism enough from the diabetes community that I don't get my hopes up when I hear about potential "cures". Digging a bit deeper though, it's clear that Vertex have a track record when it comes to developing life changing treatments for other conditions - if anyone watched Married at First Sight Australia and heard Lyndall talking about how her life has changed dramatically after starting a ground breaking new CF treatment, you might be interested to know that the drug in question was developed by Vertex. If it works, it could be a "functional cure" for T1D. Definitely one to watch. 👀
To read more about this, go to Ginger's article for T1D Exchange or this article by the JDRF.
Learning new things about the Medtronic 780G
Anyway, away from cure talk and onto tech. I've been using the Medtronic 780G for more than 2 years now and I think I've written more about it on the internet than pretty much anyone else so when I walked into the Medtronic product presentation theatre I wasn't expecting to learn anything new. I was wrong!
During the Medtronic presentation there was an acknowledgement that mealtime management and carb counting are still quite a burden for users of hybrid closed loop systems. In real life, accurate carb counting is difficult and sometimes people forget to bolus at all. Instead of ignoring these issues, the Medtronic team has looked at how the 780G system can deal with these real life scenarios, and to explore how using the system can be simplified even further.
They presented data showing time in range for different bolusing strategies - no bolus at all, fixed boluses (for example, saying that every meal was 50g of carbs) and precise carb counting. The conclusion was that the 780G could deal with all of these meal management strategies (surprisingly well I thought). As you might expect, the more precise you are at entering carbs, the higher the time in range, but time in range was still very good even with no bolusing. You can read more on this "simplified meal management" approach in this article. My tweets about this were picked up in the UK's DSN Forum podcast which is a great roundup of highlights covering type 2 and type 1 news from ADA2023 which you can listen to here.
When I got home I put this simplified meal management strategy into practice - I went out to a work dinner and I didn't bolus at all - the Smartguard algorithm brought me back into range without me needing to do anything. I've experimented with this a few times and had mixed results depending on what I am eating but it's a relief to know that the system has my back when I take my eye off the carb counting ball (and I also don't have to feel guilty about it as I can tell myself it's now a bona fide strategy rather than forgetfulness or laziness 😂) .
I was also lucky to have the chance to attend the Medtronic event on the Saturday night where I saw the Simplera being worn on the arms of Medtronic team members for the first time. The Simplera is the next generation CGM being developed by Medtronic. It's a single use fully integrated unit a bit like the Freestyle Libre (so no separate transmitter), and no overtape! Hooray! I can't wait to try it.
I'm also looking forward to using the 7 day infusion set which is now available for order in my Medtronic eshop. This is going to reduce my diabetes admin burden and reduce waste, so it's a win all round.
#dedoc hot topics
Engaging with fellow diabetes advocates through the #dedoc voices group was one of the highlights of my conference experience. Just picking out a few topics we talked about:
Taking Action to End Diabetes Stigma - Consider taking the pledge to end diabetes stigma here (I have!) and spread the word!
PWD involvement in research - This is an important topic for me (I'm on the Exeter Diabetes PPI Group) and I had some very insightful conversations with Linxi Mytkolli from Diabetes Action Canada and fellow #dedoc voice. She truly is an expert on this and our conversations will continue beyond the conference so we can bring best practice to the PPI group I'm part of.
Sustainability - We hate waste. We're uncomfortable about single use tech that can’t be recycled. Uncomfortable about throwing batteries away. People are busy working out how to make products last longer to reduce waste and cost. This really matters to end users.
DIY tech - I felt in the minority - a lot of my #dedoc voices peers are using DIY loop systems that are a lot more customisable than the commercial hybrid closed loop technologies available. Some of them don't even bolus at all! I am very jealous.
Access - There was a global perspective on these discussions. From limited access to diabetes tech in Brazil to lack of basic provisions in India and Madagascar to postcode lottery in the UK. I know that there are access problems in the US too, and not everyone has insurance and the ability to choose whatever they want. Some of the discussions we heard at the conference felt like a “Hollywood” version of care (I'm looking at you, 60-minute private diabetes psychology clinics) that is just not part of real life for any of us.
PWD involvement in innovation - recently I wrote about my frustration about some of the “diabetes innovations” I hear about and some of the pitches at ADA were no different. In the future I’d love to see PWD involved in selecting the shortlist for the next ADA innovation challenge and a more diverse judging panel watching the pitches.
Advocacy fatigue
I know I am enormously privileged to have access to the conferences, to be able to afford to take an unpaid week off and to have a supportive family, but this isn't the case for lots of people. How realistic is it for people without the same flexibility and resources that I have to join conferences like this? Unfortunately not very realistic at all. This has been weighing on my mind.
This is the third full week I have taken out of my normal life to do an intense period of diabetes advocacy over the last year. It was brilliant to have the opportunity to join another conference but the reality is that it is also unpaid, disruptive to work and family life, and time consuming before, during and after the conference.
This is the first time it has taken me nearly 2 months to write up and publish my detailed thoughts on a diabetes conference. I managed to get some first thoughts out pretty quickly (see here and here) but then life got in the way.
It was partly because of this that I just made the decision not to apply to attend #EASD2023 as a #dedoc voice. There were a few other reasons too:
Diminishing returns: I felt that there were diminishing marginal returns from attending conferences so close together. EASD was great for research, ATTD was great for research, networking and seeing diabetes tech, ADA was great for networking but not a lot more on top in terms of research and tech.
Working out how I can have the most impact: I do quite a bit of work in diabetes, including looking after my own diabetes 24/7 every day, and I have to work out how I get the most impact from the time I spend. I write tech review articles, I give my input to researchers, I speak to diabetes companies and I attend a diabetes public patient involvement group (which involves reading and commenting on research proposals and joining meetings to discuss them), as well as joining in with the social media conversation when I can. With all these opportunities to get involved I have to ask myself: What's the best way of measuring my impact? What do I enjoy the most? These are the things that govern my decisions about what I will and won't say yes to now, and I don't feel like conferences are going to be my main focus for a while.
Valuing my time: When it comes to diabetes conferences, I suspect most of the attendees are there as part of their professional roles and are therefore being paid for the time they spend there. People with diabetes bring an expert perspective to discussions that still isn't properly valued - actually it isn't financially valued at all. Many of us want to do our bit to help but would be overwhelmed if we said yes to every opportunity to fill in a survey, speak to a researcher, join a panel. attend a conference, have our "brains picked". The opportunity cost for us is less free time, less time with family, less time spent working and earning. Recently, I was invited to give a patient perspective on something for a diabetes manufacturer and I was offered £13 for my time. Better than zero but not really good enough given all the competing demands in life.
Follow the #dedoc voices for all things EASD2023
As I won't be joining them this time, I would encourage you to follow the #dedoc voices across social media when they hit #EASD2023. They are an exceptional group of new and familiar faces working tirelessly to empower and support diabetes communities worldwide by sharing what they learn and #payingitforward.
For other people with diabetes reading this, if you're interested in connecting with other people with diabetes from around the world and want to know what it's like to join a diabetes conference, I would strongly encourage you to apply to become a #dedoc voice. You can attend virtually or in person and the more diversity in voices the better. You can read more about dedoc here.
Thanks and acknowledgements
Thanks to #dedoc for the scholarship to attend ADA. They paid for my conference entry, flights and accommodation in San Diego.
Thanks to my husband and kids for supporting me despite another disrupted week of family and work life in the name of diabetes advocacy!
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Thanks for reading 😊.