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A post really only relevant to Australians with T1D, but the broader discussion about needing to include PWD in policy decisions and implementation processes is relevant to the entire diabetes community.
For many years, I worked for Australian diabetes organisations and one of the roles I had was to be involved in policy implantation plans. These discussions were typically highly detailed with many moving parts, and many stakeholders to consider.
One of the reasons I was included in these discussions was because it meant that there was a voice of a person with lived experience and expertise in the room who could point out the realities of proposed implementation plans or policy change. This was important, because often the practicality of what a change meant got lost as rules were drawn up.
When there isn’t a person with diabetes in the room, things happen that made our lives more difficult. Case in point – a few years ago when new AustRoads Assessing Fitness to Drive Guidelines introduced a requirement that an HbA1c below 9% be used as a measure of “satisfactory control” for licensing purposes. The result was confusion, anxiety and, in some cases, people with diabetes having their licences affected because of an arbitrary HbA1c threshold that seemed disconnected from actual driving risk and the realities of living with diabetes.
Today I received notification of an upcoming change to the NDSS and it seems there has been little consideration of how the implementation of that change will affect people T1D.
What’s the change?
Dexcom G6 transmitters and sensors will no longer be available on the NDSS from 1 October this year. Of course, this isn’t a surprise. We have seen the transition from G6 to G7 in other countries and it was just a matter of time before it happened here in Australia. While it only affects us now, Australians have known about this because we’ve seen our diabetes friends elsewhere around the world deal with it. This means we have had time to consider our options, stockpile G6 sensors and transmitters if we don’t quite feel like it’s time to change yet and chat with others about what their plans are.
In the email is this:
As you currently access Dexcom G6 through the NDSS, please see your diabetes health professional before 1 October 2026 to change to a new continuous glucose monitoring (CGM) device. They will discuss the most suitable device for your needs and make the change through the NDSS. We recommend booking an appointment soon, so your health professional has time to make the change before 1 October 2026.
My concern and outright frustration is about why the onus of this change is falling to people with T1D. Why are our NDSS preferences not being automatically changed to the new Dexcom product? Why are we required to see a health professional to do this?
If I were in the room when discussions about the implementation change, I would have pointed out the following: Many people with T1D have been using CGM products for years. It is possible to access different devices to those on our NDSS preference without a HCP.
And I would have asked:
Why isn’t there an automatic preference change to the new Dexcom product?
Why are people with T1D not able to make this decision themselves without mandated clinical oversight?
And if we must see a HCP to change brands, why isn’t that a decision we can make ourselves?
Some pumps only integrate with Dexcom CGM products, so what is there to discuss in that appointment?
Has anyone considered the expense that will be incurred by PWD needing an appointment, the lengthy wait time to see their HCP? I expect many HCPs will be happy to take care of simply making the change without an appointment, but if they insist, PWD will need to take time away from work or school.
Why is the language in this letter unnecessarily paternalistic? The idea that PWD don’t know what is most suitable for our own needs completely ignores that we manage T1D largely on our own (we get, on average, less than 4 hours a year with our HCP) and make hundreds of decisions every single day.
I completely understand that all people are different, and some PWD would prefer to see their HCP before changing tech devices, but that should be the choice of the person with T1D. Not the decision of an administrative process.
Diabetes admin will forever take up far too much of our lives. It frustrates me when unnecessary tasks are added to the never-ending to-do list because no one has asked a simple, but critically important, question: What will this mean for people living with diabetes?
Details about this change can be found here.
Here I am taking mine to the Taj Mahal.
It’s hot in Melbourne today and it’s going to get warmer over the next few days. I’m loving the bone-warming sun that just makes everything look so sparkly and bright. So, I’m spending as much time as possible soaking up the rays (and adding to the ridiculous tan mark around my Dex), because the cooler weather will be here before I know it. I’m trying to build up those vitamin D stores to last me for when winter hits here and I’m reliant on quick trips to the northern hemisphere for work to see the sunshine and warmer temperatures.
Anyway, diabetes doesn’t take a break over the summer. Or winter. Which means, there is always lots to read and see about it. Here are some of the things I’m catching up on now.
Hospital life in pictures
This piece from the guardian will break your heart. Explained pictorially, it’s easy to see that the medical system is broken, medical education is broken, hospitals can be incredibly cold and anxiety inducing places, doctors are at breaking point. And patients in the system are left to deal with the fallout from the disarray.
IDF comps
The International Diabetes Federation is working to reduce the stigma association with diabetes-related complications, with a focus on how the language used can make people feel judged and stigmatised. Last year, they launched the #DiabetesComplicationsTalk Facebook page, encouraging people with diabetes to share stories and support each other.
It’s really great to see the IDF in the #LanguageMatters space, encouraging people to openly speak about diabetes-related complications to help reduce the stigma associated with them. More here.
Diabetes Voice
Still on news from the IDF, the organisation’s quarterly magazine is now available electronically. The first edition is an absolute cracker. Start with this incredibly powerful piece from editor, Elizabeth Snouffer, about diabetes-related stigma. Read it. Share it.
Patient Revolution
If you’ve not checked out the Patient Revolution website, now is a great time to have a look.
Start with this page, which is a library of stories you can click through, finding any specific topics that you are interested in.
Also, there is a Patient Revolution chat which uses the hashtag #WhyWeRevolt. To keep up to date with their chats, and to take part, follow @PatientRev on Twitter.
1,200 mason jars
Do you ever find yourself in the midst of a Twitter thread, wishing, in equal measure, that you hadn’t started, but can’t get enough of it? Sometimes these threads are diabetes-related; sometimes they’re not. Go here for one that is definitely not.
I have spent far too much time in the last week invested in this bizarre tale. There is a lot to take away from the whole saga – maybe starting with: don’t pay USD$169 to hear someone ‘teach’ you how to ‘be you’. And there are a lot of unanswered questions, such as what the hell is going to happen to the mason jars.
Happy reading. (You may need a drink …)
Diabetes in the US
I will never understand the US health system. My head and heart hurt as I hear the struggles of friends with diabetes, and the difficulties they have accessing insulin, and diabetes tech and supplies.
This piece from the New York Times talks about non-medical switching, where insurance companies decide which drugs (and devices) they will cover and subsidise. In Australia, the government decides which drugs will be listed on the PBS (Pharmaceutical Benefits Scheme). If a drug is on there, it is the same price for everyone who has a prescription. There are some drugs that require a special prescription to be provided at the subsidised price. But there is no extra negotiating or pleading, or any involvement, with insurance companies.
In a system that is broken beyond measure, this seems like one more roadblock to make just surviving with a condition such as diabetes impossible.
Going beyond
Beyond Type 1 has grown to include a new platform for people with type 2 diabetes. Check it out!
Real life Loop stories
The team at diaTribe has a new series of personal stories of people who have been using DIYAPS solutions. Adam Brown’s story was first, and Kelly Close has now offered her experiences. Such a great idea to get a number of different insights into what has worked, what hasn’t and hopes for the future of DIYAPS.
Sharing and caring
Also from diaTribe, this great piece from Kerri Sparling which provides her own and others’ perspectives on sharing of CGM data. There is no one way to share data – it is personal, individual and can change over time, depending on circumstances. Some choose to; others don’t. I love this piece because it is balanced and offers some interesting thoughts.
Ascensia and CGM
More tech choices for people with diabetes is always great to hear, so Ascensia’s recent announcement of their move into the CGM market has been met with enthusiasm from the community. Read their release here and Diabetes Mine’s take on the announcement here.
SoMe at conferences
I believe social media engagement and use at all health conferences is a critical and necessary part of any communication strategy. There is no better, easier or more effective way to share details of the conference that by encouraging the people attending to broadcast using their own social media networks.
This article explores that, referencing the ridiculous photo ban at ADA in 2017 (which thankfully was changed in 2018).
Menopause and T1D blog
Sarah Gatward is a blogger from the UK and she is writing a series sharing her experiences of living type 1 diabetes and going through menopause. Yes! And thank you, Sarah. Start here.
NDSS reminder
Now is a good a time as any to make sure your NDSS details are up to date. Remember – the NDSS is not just about subsidised diabetes supplies. It also provides information and support for people affected by diabetes.
Go here to make sure your registration details are correct.
Bin the fax
All my dreams came true when I read this article in the Limbic today! Finally calls to get rid of the archaic fax machine in health care. Halle-bloody-lujah!
Technology in diabetes has come a long way in recent times. In the almost-sixteen years I’ve had diabetes, we’ve seen the advent of ‘smart’ pumps, CGMS and even trials of closed-loop systems that make the artificial pancreas seem a real possibility in the not-too-distant future.
BGL meters are smarter too, with new ones having built-in wizards to help keep track of insulin on board to avoid stacking-induced hypos. Carb to insulin ratios and insulin sensitivity factors can also be programmed to help calculate the amount of insulin required, taking into account how much insulin is still active, the carbs in what you are about to eat as well as your current BGL. These calculations, once the domain of pumps only, can now be used by all people with diabetes with minimal training.
There are aggregate apps that pull together data, make them into pretty graphs and assist with finding patterns, highlighting problems and allowing the user to send the information to their HCPs for online discussions (or follow up at your next face-to-face appointment).
There is data everywhere and we can track, estimate and predict our BGLs, insulin doses, carb intake. It’s all there for the taking.
And it can be overwhelming.
If information is power, then with this much information at our fingertips, we should all be incredibly powerful! But sometimes rather than power, instead I find it’s information overload. I stop responding to the data because there is just too much of it. In the same way that we are bombarded with social media updates so we stop listening, the never-ending data stream become white noise, too hard to distinguish anything of any real meaning.
I mentioned that in an endeavour to keep things simple, I stopped wearing my CGMS. There was no point in attaching an $80 sensor if I wasn’t going to be doing anything with the numbers it was constantly giving me. Instead, it made sense to do whatever BGL checking I felt I could manage and actually respond to the information in a meaningful way.
I’m still enjoying this lower level of data collection and am finding that it has contributed to be staying on track, rather than contributing to a season of burnout. Tailoring the information I can deal with is a smart way for me to ‘cope’ without being the data nerd I am at other times.
You will never hear from me that the technology available in helping manage our diabetes is a bad thing. You will never hear me say that it is a waste of time or pointless or an unnecessary expense. But I will say that I think there needs to be an acknowledgement and understanding that sometimes it’s just too much and can result in feelings of desperation, exhaustion and a sense of it all being just too much!
If you are finding that all the data is excessive and paralysing you into inactivity, think about cutting back the information you are collecting to the basic minimum. This, of course, will be different for everyone and there is no right amount of data for everyone. Being safe, feeling satisfied and being able to cope with what you are getting is key.
It’s Friday! So here are the Pogues.
Also – would you vote for me in the Australian Best Blogs 2014 Competition? Click here to be taken to a short survey and select Diabetogenic (half way down the first page) as your blog of choice. Thank you!!
Diabetogenic 