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Government’s Disability Spending Changes Endangering Lives Of Children And Health Of Parents

The Government’s decision to reduce access to continuous glucose monitors (CGM) not only threatens the lives of children with type 1 diabetes and increases the potential for ‘Dead in Bed’ syndrome, but also threatens the health of their parents an AUT academic says.

Public Health researcher Dr Catherine Crofts, a New Zealand registered pharmacist, says that reducing CGMs to consumer electronics or items that provide carer respite will prevent their purchase and is “incredibly short-sighted".

Several changes to the rules covering disability spending were announced on 18 March 2024 on the Ministry of Disabled People's Whaikaha website, which would stop CGMs being purchased through the disability allowance.

“CGMs are not consumer electronics,” Dr Crofts says. “CGMs are life-saving medical devices which enhance quality of care. And there is no other system that reduces parental or carer stress like CGMs .”

People with type 1 diabetes have very unstable blood glucose levels and sudden or undetected changes in their blood sugars can have life-threatening consequences.

Undetected or poorly managed episodes of low blood sugar hypoglycaemia can result in seizures, brain damage or death within hours. This is known as ‘Dead in Bed’ syndrome, an unexplained but otherwise non-suspicious death in someone with type 1 diabetes.

Tragically for many, especially children, symptomless ‘hypos’ can occur during sleep, when levels naturally dip around 2am.

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Before CGMs, people with type 1 diabetes or their parents needed to manually prick their fingers to perform a self-check multiple times per day and through the night.

As most people are younger than 15 years old when they are diagnosed with type 1 diabetes, the responsibility for the regular blood glucose checks, interpretation, and management falls on the carer, especially for the middle of the night checks – meaning that parents become more sleep deprived than typically expected.

CGMs, which have been in common use for more than a decade, enable automated and high frequency monitoring of blood glucose levels. They also sound alerts when blood sugars move out of pre-set ranges – which includes sending messages to smartphone apps.

This means they allow earlier warnings of blood glucose deviations, prevents sore fingers, and allow remote monitoring and improve sleep quality.

They can also interpret the results which helps with management plans, all of which reduces carer burden.

“CGMs are vital health monitoring devices for any person with type 1 diabetes but especially children with this life-long, life-threatening, incurable condition that requires constant monitoring,” Dr Crofts says.

“People with type 1 diabetes cannot self-regulate blood glucose levels. Without good blood glucose control, you can die within hours. CGMs are an important early warning system.”

Currently CGMs cost the carer between $2500-5000 per year depending on the system used. If this burden must be absorbed by the family, given the Government’s crackdown, the cost will be significant for many families. But if these families cannot continue using CGMs and must return to the manual finger prick system, the cost is more than financial.

Carers that consistently get up in the middle of the night to monitor blood sugar levels could have up to 20 years of poor sleep.

Sleep deprivation also impacts on interpersonal relationships, employment performance and job retention, while increasing the risk of developing mental health disorders such as depression.

The manual fingerprick system takes a lot more time compared to CGMs, and there is no option for early warning alarms or remote monitoring.

People with high stress levels and poor sleep also have a significantly increased risk of developing increased insulin resistance, which, over time, leads to metabolic diseases such as type 2 diabetes with associated complications of heart disease, kidney failure, cancer, or dementia.

“Reducing access to the CGMs in children will increase health-care burden in the long-term by increasing the risk of ill-health in the carers,” Dr Crofts says.

“Without CGMs, carers of children with type 1 diabetes have a much greater risk of increased stress and poor sleep quality leading to burn-out, mental distress, fatigue, accidents, or employment challenges.”

“CGMs relieve carer burden in a way that cannot be replaced by other means. The New Zealand Government needs to be increasing access to CGMs, not removing it.”

It all adds up to the costs of not providing CGMs outweighing the costs of the devices.

“We already have inequities for children with type 1 diabetes accessing CGMs in New Zealand, despite clear evidence that show CGMs improve health,” Dr Crofts says.

“Removing access to this funding will only widen the inequity gap and place more strain on families as they return to the, frankly, archaic system of finger pricking, with poorer health outcomes, including increased risk of death.

“The long-term solution that would remove all these inequities is to fund CGMs for all children with type 1 diabetes or on insulin through Pharmac,” she continues.

“This appears to be underway, but how long will that take? The bigger question is, without access to CGMs, how many children will die?”

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