Aotearoa is behind the world in funding a lifesaving diabetes technology that has been proven to radically change the lives of those living with the disease. University of Otago diabetes researchers explain why it’s so important Pharmac is finally taking the first steps to address this serious health inequity.
Pharmac has just announced it is accepting commercial offers for supplying Continuous Glucose Monitors (CGMs) – a life-saving and life-changing technology for people with diabetes.
This is the first step in a number of processes that just might lead to public funding for CGMs. But it comes after long years of public petitions and social media campaigns, and finally a select committee hearing in 2022, all to try to get movement on this vital issue.
How did we get so behind, and why would this advance matter so much?
About diabetes and the CGM
Over a quarter of a million people in Aotearoa New Zealand live with diabetes and about 10 percent of these will have Type 1 diabetes. Diabetes is a serious condition that can shorten lifespans by over 20 years in some instances, and currently is one of the leading contributors to death in New Zealand.
But diabetes is not a sexy, sellable disease – with much of the stigma generated by misinformation – and despite how common it is, it has often lagged behind other comparable serious illnesses in terms of both media attention, and funding for newer treatments and management options. This has had enormous implications for those living with its day-to-day burdens.
While a CGM doesn’t look like much, it can dramatically change the lives of people with diabetes. About the size of a milk-bottle cap, this device is worn on the body - often the arm, or the stomach. Using a tiny sensor under the skin, it monitors glucose levels continuously, and sends this data in real time to a smartphone - replacing the need for multiple-times-a-day finger-prick blood tests.
CGMs can give alerts when levels are getting too high or too low. It can also send instructions straight to an insulin pump, worn on the stomach – and when paired together can create a hybrid artificial pancreas system.
New Zealand and the University of Otago are world leaders in research into artificial pancreas. CGMs and artificial pancreas technologies are now well established as the gold standard for diabetes care, and unlike most other countries we like to compare ourselves with (such as the UK, Australia, Canada), these are not funded in New Zealand.
At every step where Pharmac has considered funding CGMs, it has been noncommittal. Most of the caution appears to come from the potential cost for the Pharmac budget. Yet it is actually better, economically, when people with diabetes do have this device, since it can reduce hospital admissions, and time away from work or school, while also creating better overall quality of life.
This is not only for the individual, but the whole whānau; for example, reducing strain on exhausted parents who often wake up to do finger-prick tests every two hours overnight, to make sure their child is safe. CGMs give children more freedom to play and participate in everyday activities and manage their own care as they get older.
Adults get similar freedoms. They can be particularly valuable for older people, people with physical disabilities or cognitive issues, and people in jobs where they can’t test easily during the day, or where a low glucose level is a safety risk (for example manual labourers or factory workers). CGMs also lead to better outcomes for both parent and baby in pregnancy.
Surviving in the funding gaps
The life-changing qualities of the device are well known in the diabetes community. But in the current situation, these devices (which have sensors that must be replaced every 14 days) can easily cost individuals and families $400-$500 a month.
Many people are driven to means such as online crowdfunding, fundraising raffles, door knocking at local businesses for sponsorship, or running side-hustle businesses of their own, to try and fund this considerable ongoing expense. This is incredibly hard on families that are already stretched thin, and ultimately isn’t a sustainable way to fund a crucial medical technology.
In fact, even with these efforts, Diabetes NZ has found that only 30 percent of people can afford to pay for a CGM.
People in the diabetes community are painfully aware of the inequity of the situation, both within New Zealand, and compared to other nations. Many have participated in petitions and advocacy for years. Meanwhile there is frustration, awkwardness, and guilt, between those who can and can’t afford the technology.
A ‘grey market’ has sprung up, for swapping or selling spare products. In some places overseas, similar issues have led to a whole movement of people making their own devices, or hacking existing devices. None of this is good for safety or equity of health outcomes, and many clinicians and researchers are now deeply concerned about the situation.
Given the cost, rates of CGM use are lower among people from lower socioeconomic brackets. This means income is essentially determining people's access to a basic level of health. CGM use is also lower among Māori and Pacific peoples. This is particularly concerning given that individuals from these groups often have worse diabetes outcomes, independent of their socio-economic status. But research shows that when you introduce CGMs, these outcomes even out – meaning that publicly funding the device could go a long way to improve equity.
Diabetes is a considerable issue for a huge number of New Zealanders. Why can’t we fund a technology that massively improves quality of life, and may actually reduce cost on the healthcare system? After so many years of petitioning, Pharmac’s latest moves are hopefully a step closer, but it’s a crucial time to not let the ball drop, and to ensure that CGMs are funded for everyone who needs them, as soon as possible.
Authors
Dr Susan Wardell is a senior lecturer in social anthropology at the University of Otago
Dr Rosemary Hall is an endocrinologist in Wellington and Tairāwhiti, and at the University of Otago, Wellington. She is the president of the New Zealand Society for the Study of Diabetes
Professor Ben Wheeler (Otago) and Associate Professor Martin de Bock (Christchurch) are paediatric endocrinologists and paediatricians at the University of Otago
Professor Jim Mann is a professor in medicine at the University of Otago
