A new, local organisation is part of a global movement of people with type 1 diabetes, who are creating technological innovations for themselves and others under the #WeAreNotWaiting banner. Tim Gunn, Chair of Nightscout NZ, explains.
Five years ago, a group of parents of children with type 1 got together and released the first version of the software we call “Nightscout CGM In the Cloud”. This enabled their children’s CGM (continuous glucose monitoring) data to be viewed “live” from anywhere with internet or cellphone coverage, and allowed parents and children with type 1 to sleep more comfortably knowing they were being “scouted” for while they slept.
Since then, Nightscout has grown into a comprehensive piece of software to manage and view anything to do with diabetes. It has also kickstarted the international #WeAreNotWaiting movement.
Nightscout NZ is a non-profit organisation that we launched on the 23rd of January, 2019.
Its mission is to act as an advocacy and education organisation to support New Zealanders with type 1 diabetes to access and implement new technologies, so that they can improve glycaemic control and quality of life. We’re independent from our US Nightscout counterpart, but we have the same core principles at our heart – just adapted to the New Zealand context.
We have a wide scope and we’re focused on patient-centred solutions. All our founding committee members are people
Nightscout New Zealand living with type 1, who have personally benefited from being early adopters of diabetes technologies.
Too few New Zealanders with type 1 currently have access to these technologies, and we’re concerned that the New Zealand healthcare system will continue to be slow to fund new diabetes technologies.
We believe that people with type 1 diabetes deserve access to transformative technologies, that these should be funded by the healthcare system, and that the costs of funding them will be offset by reductions in hospital admissions and diabetes-related complications.
Since we launched, we’ve given talks in Christchurch, Rotorua, Auckland, Cambridge, Hamilton and the broader Bay of Plenty to a very warm reception, which is great to see. Our advocacy work includes talking to diabetes health professionals as well as to people with diabetes.
WHAT WE ADVOCATE FOR
Funded access to continuous glucose monitors (CGMs) and flash glucose monitors (FGMs) for every person with T1D.
Data from funded diabetes devices being readily accessible to patients, so they can share this with whānau, supporters and healthcare professionals.
Funding of an accurate blood glucose meter (such as the Bayer Contour Next One) to ensure CGM and SMBG (self monitoring of blood glucose) readings are as accurate as possible.
Funding of modern and innovative insulin for every person with type 1 diabetes.
Funding of approved commercial Artificial Pancreas Systems, particularly interoperable systems.
Recognition for the value of peer-to-peer learning and support as part of the model of diabetes care in New Zealand.
Given that funding changes may take time to achieve, we do not believe that people with diabetes should wait for these developments to occur. Thus, we also advocate for – and support people with T1D in their use of – open-source Do-It-Yourself (DIY) diabetes technologies, specifically:
DIY CGM technologies such as Nightscout, Spike, Xdrip+ and bluetooth converters for FGM.
DIY artificial pancreas technologies such as OpenAPS, AndroidAPS and Loop.
Although DIY technologies do not currently have regulatory approval, multiple observational studies of OpenAPS and AndroidAPS, demonstrate that DIY technologies are more effective and safer than existing standards of care.
Internationally, DIY diabetes technologies are increasingly recognised as having a positive, disruptive and transformational influence on diabetes care and are now a regular feature at international diabetes conferences.
Tim Gunn is the Chair of Nightscout NZ and an AndroidAPS developer (one of the DIY artificial pancreas systems).
