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.
