Type 1 diabetes: Rotorua family wants Pharmac to fund continuous glucose monitors (CGMs)

When Charlie Windell’s wife and son go to sleep each night, he’s not sure if they will wake up the next morning.

Jayne and Jacob Windell have type 1 diabetes, which means their bodies cannot regulate the amount of sugar in their blood. If their sugar levels get too high, they risk organ failure. Too low and they could slip into a coma in their sleep.

Type 1 has no cure, but Charlie says a small, wearable machine could take their fears away: the continuous glucose monitor (CGM).

The life-changing monitors are not subsidised by the Government and, according to Pharmac data, could cost each diabetic up to $400 a month.

The medicine-funding agency announced in February it was seeking competitive commercial offers to fund CGMs - the “first step” in the process.

But for the Rotorua businessman, the process was not moving fast enough.

Charlie remembered the day he learned about type 1 diabetes like it was yesterday.

“It was September 2007 and it was the first week of the school holidays,” he told the Rotorua Daily Post.

“Jacob was six years old.”

Charlie had taken his son to the GP for a check-up. The next thing he knew, they were being rushed to Rotorua Hospital’s emergency department because of Jacob’s blood test results.

“They had him on a table and they came at him with needles and he was screaming bloody murder. I’ll never forget it.”

Jacob was diagnosed with type 1 diabetes, an auto-immune disease that attacks cells producing insulin, the hormone that maintains healthy levels of sugar in the blood. A lack of insulin can have fatal consequences.

“From that point forward, I was like, ‘Here we go’.”

“Having type 1 is like a metronome tapping in your head. If your blood sugar gets too high then you get organ failure; too low and you fall into a coma.”

Charlie and Jayne Windell say funded continuous glucose monitors would make a huge difference in their lives, and their son's. Photo / Andrew Warner

According to the Ministry of Health, more than 250,000 people in New Zealand have diabetes and 5 to 10 per cent of those people have type 1. While the condition can be managed, people with it need to test their blood sugar levels regularly throughout the day.

CGMs attach to the arm or stomach and provide accurate readings of blood sugar levels through a digital sensor. A connected app can sound an alarm if levels become dangerous.

The up-to-$400-a-month cost, however, put CGMs out of reach for the Windells.

The currently funded option is finger-prick blood glucose meters.

Jacob Windell said he was testing his blood and administering his insulin injections within 1.5 years of being diagnosed.

Jacob Windell (right) and Matthew Butterfield, pictured in 2017 demonstrating the usage of their finger-prick glucose meters.

Learning to manage his blood sugar levels had been difficult.

“You have to listen to the different cues of your body, and my cues for low blood sugar would be different from somebody else’s. A lot of the time I know it’s going to happen before [it does]. I’ve had practice.

“But if you make one mistake, it can have terrible consequences unless you catch it.”

He was “used to” diabetes being a part of his life, but there were times having to test his blood made him stand out.

“At school, I was carrying a little bag around with me and doing my diabetic stuff in interval breaks and some people didn’t understand why.

“I had another kid steal my kit once and I ended up fighting him for it.”

Now studying psychology at the University of Waikato, Jacob planned to do his Master’s focusing on the mental health impacts of type 1.

“I think every diabetic will have a day where you ask, ‘Why me? Why do I deserve this?’ It does really weigh down on your mental health sometimes.”

Jacob Windell, 21, was diagnosed with type 1 diabetes when he was six years old.

Jacob said subsidised CGMs could improve every type 1 diabetic’s life “by leaps and bounds”.

“It would definitely help with the social aspect because you’re not bringing out a little machine and making yourself bleed in front of people.”

Jacob said the ability to monitor trends in his own blood sugar levels through the app would make his condition easier to manage.

“You’d have all the information right there. It’s convenient and it would help you to learn your body’s cues and make correlations between how you’re feeling and your blood sugar without beating your head against a brick wall until you figure it out.”

Jacob said the CGM app would also make it easier to explain his condition to others.

“I could show them my data and explain how it works. It would make the conversation flow smoother, and I think there’d be less social stigma around it.”

Jayne Windell was diagnosed with type 1 diabetes as an adult. Photo / Andrew Warner

Charlie Windell’s wife of five years and Jacob’s stepmum, Jayne, was diagnosed with type 1 diabetes eight years ago after experiencing excessive thirst and dramatic weight loss.

“I was living alone then, so it was terrifying. I was frightened and very depressed because I felt ill.”

Jayne said after being diagnosed with type 1 as an adult, she worried for 24 hours a day, seven days a week.

In her view: “CGMs shouldn’t be a luxury. It’s time for New Zealand to wake up and catch up.”

“There are kids and adults being diagnosed every day.”

Pharmac director of operations Lisa Williams said Pharmac was “getting closer to considering funding CGMs”.

“We have heard from people living with diabetes, their whānau and the healthcare sector that CGMs are an important tool for monitoring blood glucose levels, and we agree.

“Significant budget uplifts from the Government mean that, depending on pricing offered by suppliers, we think funding CGMs may be possible.

“As our procurement activity progresses, Pharmac will work with the diabetes community and share more information with the wider public.”

Charlie said he hoped sharing his family’s story would help to raise awareness about type 1 diabetes and encourage support for funding CGMs.

“People with different conditions shouldn’t have to fight for the same dollar.”