Abstract
Aotearoa New Zealand does not currently provide public funding for Continuous Glucose Monitors – a device with established benefits for the management of Type 1 Diabetes. While several brands of FGM (Flash Glucose Monitor) and CGM (Continuous Glucose Monitor) are currently available for private purchase, the CEO of Diabetes NZ has stated that only 30% of people can afford the devices and their ongoing costs. This report aims to explore the lived experiences of families of children with Type 1 Diabetes, who were fundraising to cover the costs of a CGM, in late 2021. It summarises the findings from analysis of multi-methodological qualitative data, including ethnographic case studies with five families of children with Type 1 Diabetes (aged 2 to 15) and content analysis of crowdfunding campaigns, news stories, and social media pages.
Findings showed that families experienced the CGM as having a positive effect on parent and general family wellbeing by creating peace of mind, a greater sense of control, improved sleep, and a reduced mental load. The device also enables more and safer collaborative care strategies, i.e. with extended family members and school or early childhood staff. For children, it meant fewer interruptions to learning and play, and greater access to opportunities. Data documented the variety of ways families were fundraising in order to access a CGM, including the Disability Allowance, personal/family savings and budgeting, help from family members, business sponsorship, crowdfunding, fundraisers, small businesses and online selling, interpersonal gifting, and engagements with media. The consequences of this situation were that families had to adopt a consumer mindset to the CGM and adjust their patterns of use and choice of device, based on financial constraints. These private, piecemeal fundraising methods were time-consuming, laboursome, and socially stressful, especially for families who already had an additional burden of care. Parents and older children were frustratingly aware of international and national inequalities in access to this technology as they engaged in these processes.
Ultimately, this funding situation is ill-suited to the high and regular ongoing cost of the device and the chronic lifelong condition of Type 1 Diabetes, and are likely to continue to deepen existing social and healthcare inequalities. The report recommends the Pharmaceutical Management Agency (Pharmac) funds Continuous Glucose Monitors for all children and adults with Type 1 Diabetes in Aotearoa New Zealand.