“Why bet against the Type 1 community?” This was a question from a session at the ISPAD conference a few years ago. It wasn’t his T1D patient that caught the community’s attention. Instead, said a person working in global health who has seen notable efforts such as the #WeAreNotWaiting movement and grassroots peer-led education initiatives in low-income countries. These efforts have made a difference and improved the lives of people with diabetes. They have been led by experienced people and supported by other diabetes stakeholders. But the starting point is for people directly affected by diabetes to identify, solve and lead the problem. Throughout the history of diabetes, community-driven efforts have been the driving force for change, from the first home glucose meters to building systems that leveraged existing technology to global advocacy movements.
And today we stand together again in Australia to advocate for better equity and fairness for all people with type 1 diabetes, and this time to promote access to automated insulin dosing devices (AIDs). We came here in solidarity.
Insulin pump funding is bankrupt. AIDs are standard of care, but the way pumps are funded in Australia leaves too many people without access to this technology. Currently, unless T1D patients have an appropriate level of private health insurance or meet the criteria for an insulin pump program, they must find funding for an insulin pump. That needs to change.
We know how to do this in Australia. It is thanks to community advocacy efforts in the early 2000s that pump supplies are listed on his NDSS. And more recently, large-scale community noise has led to CGM being registered in his NDSS for all Australians. Of course, these victories were successful because everyone was involved in advocacy: people with lived experience of diabetes, medical professionals, health worker groups, researchers, diabetes community groups and organizations, and industry. What a lot of noise you can make when you sing from the same sheet music!
There is currently a focus on improving access to automated insulin delivery systems. Because there is clear evidence that AIDs reduce the suffering of diabetes, improve quality of life, and (for those of you who like numbers!) help raise blood sugar levels. Even better for bean counters, this is a smart and cost-effective investment for our health system.
If AIDs are the standard of care, we need to remove the financial barriers that prevent people from accessing them.
We would appreciate your cooperation in this regard.
Please sign and share the petition it was started by Dr. Ben Nash And it is supported by a group of T1D patients (including myself). Petitions are a great way to get people talking and interested. It helps build momentum and contributes to the community-wide conversation. While we know the T1D community is already on board, many healthcare professionals, community groups and diabetes organizations want to share and promote the petition and actively participate in broader advocacy efforts. I am. That’s nice!
postscript:
Naturally, there are questions as to why this study is specific to access to T1D technology. It’s a fair question, and I think our very own bionic Wookiee gave us an excellent explanation of it earlier this week when he said in a social media post:
‘The AID system was developed for T1D (it allows you to track all the insulin that enters your system without having to deal with your body’s fluctuating insulin production). Therefore, it currently mainly applies to T1D…
Expanding access to CGMs and pumps to patients with other forms of diabetes other than T1D is important for the future. Expanding access to her AID for the T1D population would be a beachhead for that.‘
And in a conversation I had about this yesterday with British diabetologist Partha Kerr, he said that the sheer numbers of diabetes can be daunting and tend to scare policy makers. That’s why I warned you that you need a starting point. He also points out that while technology is important in T1D when it comes to interventions that change outcomes, there are other options for other types of diabetes. I would also add that other options often have stronger evidence and are therefore already funded.