Laneways with Diabetes: Same Same Different

**Before you read this – Disclosure – part of my trip to Melbourne was as a guest of Abbott and the Libre team who paid for my flights, accommodation and various food needs across the 2 days of #dx2Melbourne, as well as providing us with some photography classes for our blogs and assorted interesting speakers, and 2 free sensors. I paid for the problogger conference and accommodation myself. I am not required to write about the Flash Libre system, or to say anything in particular about it, but I will be writing about it in some parts of this post. All opinions of the products are my own after trialing 5 sensors ( 4 of which I paid for) and chatting with the team from Abbott about the pros and cons from my perspective.

This story is brought to you by 5 days of blogging conferences – 2 at the ever fabulous Problogger event, where a tonne of bloggers who write about all kinds of things, come together from across the country, to learn about how to create better blog content, better communities and better businesses. I got a lot of great ideas for things I am going to be bringing to you all, and I got to catch up with some beautiful people. The second 2 days were spent with a small group of my special peers – other bloggers with diabetes, supported to come together by the team at Abbott. The trip started with a Same Same Different moment with my usual after breakfast spike deciding to become an after breakfast crash, and a hypo treatment before we headed to the airport….hubby and I were thrilled on arrival to find our apartment was HUGE and close to the ProBlogger event for me, and the MCG for him to go see his beloved Carlton!

The things that stand out in my head from this whirlwind of 5 days from leaving a wintery Adelaide morning with my husband, to arriving back in the dark at bedtime, full of thoughts, all seemed to come together with this idea of “Same Same Different”. What is that all about? Well from the discussions I had across these 5 days there were links and pathways, just like the crazy criss-crossing of the tramlines all over the Melbourne streets – across time and place, that lead me to pondering how things can be the same but so much different, when it comes to life, people, and diabetes.

We heard from CEO of Diabetes Australia, Greg Johnson, about the history of diabetes organisations in Australia. It was fascinating to hear about the beginning of the “Diabetic Associations” in Australia in 1957 being by people with diabetes, for people with diabetes – and how this has grown into the state organisations we have today, with the overarching federated body. What was most interesting about this was that many of the original goals of the Association remain the same today – especially as it relates to people with diabetes needing to collaborate with health care professionals, but not be controlled by them. Yes as far back as 1957 people with diabetes were talking about patient centred care, although this was not recognised as this, or welcomed by some in the medical world. Greg said many doctors felt threatened by this and thought that people would shared unreliable information between themselves, which could somehow be “dangerous”.

Nothing much has changed here in some cases, with there still being ridiculous concerns about people with diabetes coming together and how we may share things we “shouldn’t”. The big difference is we can now connect with each other all over the world, at any time, thanks to the internet and social media supporting the diabetes online community. We also have access to so much information at the press of a button and can research our health needs ourselves, providing a powerful way to live a healthy life with diabetes. I remember when doctors would advise you never to go to “Dr Google” but now I have doctors who send me there for information! So, Same Same Different.

Another goal way back in 1957 was affordable access to medicines and technology and this remains the same today, but the rate at which diabetes tech moves is now astounding – Same Same Different. The Libre is just one of these things, with many more in the works. We had a great opportunity to chat with the team at Abbott, with the Senior Director Global Medical and Scientific Affairs for Abbott Diabetes Care, Dr Mahmood Kazemi being present for the 2 days, along with some of his team. Dr Mahmood, who is an Endocrinologist, was able to answer many of our tricky questions, mine being around the difficulty I have had with accuracy of the Libre – yet again Same Same Different, as so many people rave about how much this has changed their lives, yet for me, it is not looking like the right device, at least not on a regular use basis.

When I was diagnosed with type 1 diabetes in 1979, not only could I get a Life Membership to the Diabetic Association of South Australia (I am not sure how many people have these memberships still!), but the big tech move of the era was going from urine testing to blood glucose monitoring. I will never forget the day my lovely doctor (who I was secretly in love with), sat with me in the hospital ward, to let me know about this exciting new technology. All I could think of was yet more needles….although I hated urine testing and felt dirty, the whole idea of a new technology was overwhelming. I fought it initially and well let’s face it, those blood glucose machines and finger prickers were pretty daunting! But what a wonderful thing to be able to see real time results instead of the all too late now readings of urine monitoring, and of course within time I embraced it.

The next big change was human insulins and no longer needing to rely on pigs to live. This was also a very mixed move for me, the change from Monotard and Actrapid, to Protophane and Novorapid – Same Same Different…. I was so scared of the fast action of Novorapid! And after a huge hypo, was placed onto Humalog, which I have stayed on ever since. I think for me the idea of change is always exciting, but scary. I know other people who embrace all diabetes tech as soon as it comes, and can not wait for a closed loop system where they do not have to manually do anything anymore….but I have a great fear of anyone but me making the decisions about my insulin doses, and will not even use the suggested bolus functions on my pump. I have no real issues with the actions of injections or finger pricks, and managing my pump. For me the biggest development would be fixing gastroparesis and the ability to resolve erratic swings in BGL’s, especially getting rid of hypos; totally accurate blood glucose monitoring and alternative methods of insulin delivery. The rapid developments in closed loop systems and monitoring options, as well as insulins, is exciting. However that cure that was promised in “20 years” 38 years ago, is still yet to really be close. And so again, Same Same Different.

Some of you asked specific questions for me to pass on about the Libre so here are a few of them. 

Do the new sensors (the ones with 2 alcohol wipes and black base in the packaging) have a different stickier adhesive?

Dr Mahmood says no, they have not changed the adhesive. He did talk about some people having reactions to the adhesives and leaving a welt. He also talked about the fact that some users are using steroid sprays or tapes to try and prevent these reactions.

I’m really excited to hear the progression with Bigfoot and would love to hear some more on that.

Dr Mahmood was also excited about this! He was not able to comment much because it is very early days. They expect it to hit the market in 2020 and the purchase of the Timesulin pen also means this will be able to be used as a kind of “smart insulin pen” which will enable users to find trends in their insulin dosing and use the technology to make recommendations on doses. This also makes them the only ones so far to be accommodating both pump users and pen users in their closed loop system. Interestingly the Libre is not approved in the USA yet. My understanding is that the tech will evolve as part of this and the version of the Libre that will be used in this technology will be different to the current scanner version.

Does Abbott have any plans to open the Australian market up to under 18’s use or approve other sites on the body for Libre use?

I forgot to ask about the under 18’s but when it comes to other sites there was robust discussion on this. There was definite agreement from the Abbott team that this needs to be researched so it can be formally recommended or not. Of course many people are using various sites for their Libre, however because they have not done any research, they can not formally give this the tick. It sounds like it is something they are going to do however.

I asked about my issues with the sensors reading high for me on numerous occasions – and I mean between 3 – 6 mmol or more, often. Given my previous high dose of vitamin C, which I then found could be a factor, as well as my fluctuations due to gastroparesis, it was suggested that the issues were more with me than the Libre….not sure how I feel about that. The sensor I had in the past week has been better with much more consistency that is more acceptable to me. I have been off vitamin C and I inserted the night before starting off the sensor. I have seen more accuracy with finger pricks – probably about 60% of the time.

There was a lot of discussion around how we have been brought up in the diabetes community to value the readings on a blood glucose monitor the most, where it is also not always accurate and that with errors at either end, a reading of 12 mmol on a Libre scan and 8 mmol on a finger prick may actually mean a reading of 10 mmol, for example. The issue for me is that this is a huge difference if I am taking any action. So if I am exercising, eating or giving a bolus, this is not an acceptable difference for me AND often with the high readings it has not been due to any timelag, as I was never at that level. Case in point, I may have had a reading of 16 mmol and was actually 8 or 9 mmol and never sat in that 16 mmol range. A bolus in response to the 16 mmol would result in a crashing hypo. Due to this I lost some faith in the Libre, meaning I was using it more for the trends arrow. At the moment with the cost of the sensors and no alarms overnight, it is an expensive arrow.

For people who do have issues a take home message was that Abbott take all feedback seriously and will look into any issues and replace sensors, so always call the customer service line for support. In terms of when we will know whether it has approval for listing here in Australia – we are all holding our breath, and it is a case of waiting. As soon as I hear anything I will be sure to share.

Some of the things I learned over my time using the sensor that work for me are:

1. Not to rely on the sensor when exercising as my BGL can drop suddenly and the sensor can not keep up (which is a time I would most like to see trends)
2. Not to rely on the sensor when BGL is rising or falling rapidly – which Abbott already recommend you do not do
3. Not to rely on the sensor when first getting out of a hot bath, or a plane (I know odd, but these 2 things seemed to make the readings way out)
4. Overnight, I tend to check with a finger prick as overnight boluses and hypos need to be very accurate and with no alarm process on the Libre, it still means me setting my alarm and waking up every night

These are just my personal experiences. I know many people who are not finding the same issues as me and certainly the data presented by Abbott shows fantastic results with people doing more checks and getting better results. Dr Mahmood did say due to my gastroparesis and rapid changes that can occur, I may just be someone where it may not be 100% accurate.

We had further discussions across the 2 days around the importance of advocacy in diabetes and the way that bloggers can make a difference within the diabetes community. The value in us all having different stories and voices to share, and being clear about what we stand for – whether you have a blog or contribute to a Facebook or Twitter chat – it is all valuable and sharing stories is vital. We also had a pretty cool photography session in the city, which reminded me how important it is when we live with diabetes that can be all consuming, that we step outside of this and see the rest of the world. Our live streamed session on mental health and diabetes was also very exciting and I would love to know if any of you were watching and what you thought? A great discussion was held in relation to diabetes burnout.

My final Same Same Different moment came when I looked around the room at the bloggers in the first 2 days of Problogger, and then did the same at the #Dx2Melbourne diabetes event. All of us are writing, speaking, podcasting etc to make a difference to the world. All of us have unique passions that can easily consume us and stop us remembering that perhaps the rest of the world is not as interested in as we are. All of us come together with some Same Same Different parts. When it comes to the diabetes community we come together with the Sameness we experience, and discover we are all different. It is that Sameness that keeps us there and that Differentness that makes the experience so rich. We really do need other people in our corner who walk the same pathways, albeit with different tracks, scenery and diversions to bring colour and depth – just like the multiple stories told in Hosier Lane through its walls and the people who inhabit it.

If you want to read more of these Same Same Different voices you should totally check out the other diabetes bloggers here:

Renza Scibilia – Diabetogenic

Matt Bendall – Afrezza Downunder

Drew Harrisberg – Drews Daily Dose

Frank Sita – Type 1 Writes

Georgie Peters – Lazy Pancreas

Kim Henshaw – 1type1

Melinda Seed – Twice Diabetes

Tanya Ilkiw – The Leveled Life

Alana Hearne – Enlightened Diabetic

Rachel Zinman – Yoga For Diabetes