Insulin-dependent diabetics say Pharmac's decision to delay funding a potentially life-saving device appears to be based on flawed assessments.
They claim continuous glucose monitors - which are publicly funded in Australia and Britain - could save the health sector millions of dollars by allowing diabetics to avoid long-term complications, which can be disabling and even deadly.
Auckland diabetic Bradley Dewhurst spends just under $100 a fortnight on his continuous glucose monitor and considers it money well spent.
After developing type one diabetes four years ago at the age of 36, he experienced dangerous swings in blood sugar levels, which sometimes caused him to pass out.
"I am self-funding a continuous glucose monitor (CGM) so that I will see my kids grow up, I meant that quite literally.
"I was born blind in one eye, the fear I live with everyday of developing retinopathy is very real. I have one chance with my vision and if I slip up that's it.
"That is the quality of life that a CGM gives me, the knowledge that I am doing the best possible to see my future."
Uncontrolled diabetes robs people of their sight, and causes strokes, heart attacks and vascular disease requiring amputations.
Continuous glucose monitors use a tiny filament inserted into the skin of the arm or the stomach to track changes in blood sugar levels, day and night and send alerts if urgent action is needed.
However, despite several applications in recent years, Pharmac has not yet approved funding for the monitoring devices.
Dewhurst said documents he had obtained under the Official Information Act showed Pharmac officials only considered the potential savings from a reduction in blood glucose test strips and hospital admissions for hypoglaecemia.
The government's drug buying agency was ignoring the much bigger cost of diabetic complications to the country and individuals, he said.
"I'm not going to go out and say this needs to be funded. I know there is a long list of other medications where people are waiting for something that will help their lives just as much as this will help me.
"What I'm asking for is for it to be treated fairly in these funding applications. This analysis I've done has shown there are huge holes in what Pharmac is doing as their analysis - even in these comments they're making for people before they consider whether it should be funded."
In the minutes of one meeting, some officials suggested "due to the nature of people's laziness" they would use the sensor instead of doing skin prick testing.
Dewhurst said this showed they did not even understand the device, which was meant to replace regular finger prick testing.
"That such misunderstandings in the usage of the device are being recorded prior to prioritisation does not give confidence that there is sufficient knowledge in those making prioritisation decisions.
"That the term laziness would be recorded in the minutes when discussing the behaviour of people with chronic health conditions suggests a lack of the required compassion and understanding that would be expected from those involved in health care."
He had written to Minister of Health Andrew Little detailing his concerns with Pharmac's assessment.
Diabetes New Zealand chief executive Heather Verry said Pharmac had put devices in the "too hard basket" for too many years.
"We're really disappointed they just haven't got on and done it. We keep hoping every year, we've been advocating the last four or five years for this technology to be funded. Australia, the UK, they're all fully funded now. And it's just life-changing for people with diabetes."
Pharmac had overlooked the massive social impact of living with diabetes, she said.
"People can be pricking 10 or 12 times a day and you can imagine how sore your fingers get at the end of that.
"Especially when you've got young children diagnosed at the age of two or three. It's not something a mother wants to be doing, pricking her child's fingers."
Some parents had to wake their children up in the night to test them, which meant no-one got a full night's sleep.
It was "appalling" to hear diabetes sufferers characterised as "lazy" in an official document, she said.
Reference to laziness 'inappropriate'
Pharmac's director of operations Lisa Williams has apologised.
"It's entirely inappropriate language and really regrettable," Williams said.
"It's not the kind of language we should be using when talking about people in in New Zealand with health needs - diabetes or anything else."
Continuous glucose meters had been assessed and were on the "options for investment" list, she said.
"That means that they're products that we would like to fund, when we have sufficient budget."
The chances of that were now a lot higher with the massive budget boost to Pharmac this year of $71 million for 2022 and $120m in 2023.
"Already, since July 1, we've funded 12 new things and widened access to 17 others. And there are more to come."
The public could have confidence in Pharmac's ability to evaluate such devices: It had 29 years' worth of experience in assessing health technology and was continuously working to refine its processes.
However, Pharmac would be contacting Dewhurst to learn more about his analysis and "lived experience", she said.
Dewhurst said he had plenty of experience to share about his continuous glucose monitor.
Just a couple of weeks ago, it saved him a trip to hospital.
He took his usual morning dose of insulin but must have accidentally hit a vein.
"My CGM alarmed for the rapid fall even though my blood glucose was still at a normal level and I quickly downed fast acting carbs, but these take time to have an impact.
"Five minutes later I was lying on the floor of my son's room unable to move, I do not have any memory of the following 30 minutes...
"If I had not drunk and eaten those carbs when I was alerted to such a sharp fall, then an ambulance would have been required."