Making our voices heard

Our wonderful team of advocates for CGMs and FGMs at the Health Committee hearing on 30 June, 2021.

On 30 June, Diabetes NZ gave an oral presentation to the Health Committee, urging the government to fund continuous glucose monitors (CGMs) for those with type 1 diabetes.

Nearly 30,000 people signed Diabetes NZ’s 2020 petition, which asked for important new medications to be funded for type 2 diabetes and for CGMs to be funded for people living with type 1.

Covid-19 delayed our associated presentation to the government’s Health Committee, and while we were waiting to present, the government listened to some of the pleas being made and announced that new type 2 medications would be funded by Pharmac.

We were deeply grateful for this result. However, we still have a lot of work to do to get CGMs funded for those who need them. We fi rmly focused our presentation on this, and we left feeling heard.

PRESENTING THE STARK FACTS

Diabetes NZ Chief Executive Heather Verry presented fi rst, followed by Associate Professor Dr Ben Wheeler, type 1 warrior Ruby McGill, and eight-year-old Eddie Writes – all strong advocates for the type 1 community.

Heather opened by describing the enormous inequity that needs to be resolved: only 30% of people who would benefi t from CGMs are able to aff ord them. She pointed out the especially signifi cant impact this has on children with diabetes and on their whānau.

She asked the Health Committee to recommend to Pharmac that funding should be provided for both CGMs and FGMs (fl ash glucose monitors) for all people with type 1 diabetes without exception, to enable them to lead as normal life as possible. This would also signifi cantly reduce the risk of long-term complications from diabetes and the personal as well as social costs of regular hospitalisation.

Associate Professor Ben Wheeler, a paediatric endocrinologist, followed up with medical evidence, talking about his work with CGMs on their own, as well as paired with insulin pumps to form an ‘artifi cial pancreas’ system.

Movingly, he said, ‘We’ve done a lot of research on continuous glucose monitoring systems and those [artificial pancreas] systems, and they are the only systems I’ve researched where people cry when you take them off them at the end of the research. They are completely life changing. It’s not a “nice to have”, CGM monitoring. It’s an essential part of our fight against diabetes, particularly type 1 diabetes, which affects over 20,000 people in New Zealand.’

Next, Ruby demonstrated the finger prick process that everyone with type 1 has to go through many times a day when they don’t have access to a CGM or FGM. She asked the committee to imagine what this would be like. She also explained the confusing lack of information that finger-prick testing gives you about what your body is doing in comparison to the information that someone with diabetes or their caregivers get from CGM technology.

In response to a query from the panel, Ruby explained that one of the biggest benefits of CGMs was simply the ability to sleep. As Ben had also said, the fear of going low over night, causing unconsciousness or even death, is something that isn’t often talked about. However, it is something people with type 1 and their families who care for them live with constantly – that is, unless they have the peace of mind offered by CGM technology.

Emily Writes’ son Eddie presented last, impressively explaining the massive impact that being able to use a CGM has had on his own life.

WHY ARE WE LAGGING BEHIND?

CGMs became funded in Australia after the death of a young child. New Zealand is now the only Western country in the world that doesn’t fund CGMs or FGMs.

We told the panel that, in Australia, the latest data suggests that children and adolescents using funded CGMs are 2.5 times more likely to reach healthy blood glucose targets. For those meeting targets, this could mean a 10- to 20fold reduction in complications risk.

It shouldn't be a luxury to live well with type 1 diabetes in NZ. As Heather said, ‘In 2021, the ambulance at the bottom of the cliff mentality is not acceptable.’ We've seen how proactive the government has been to protect Kiwis from Covid-19 and the potential long-term health complications. What about people living with type 1 diabetes?

STAY UP TO DATE WITH THE CAMPAIGN FOR FUNDED CGMS

See our presentation at www.diabetes.org.nz/petition-hearing See Emily Writes’ description of the presentation at emilywrites.substack. com/p/eddie-shares-his-story-withpoliticians. For updates on the response to the presentation, keep an eye on our Facebook page at www.facebook. com/diabetesnz