There are cyborg children among us, and they shouldn’t have to pay so much just to live, writes Susan Wardell.
Tyler is nine years old and wants to go on the trampoline. She interrupts her mum, Natalie, to ask if she can.
“What number are you, first?” Natalie queries in response. Tyler gives a number, having already checked the data.
“OL, you can go.”
Tyler promptly sits down and lifts up her t-shirt to unplug a device connected to her stomach amidst a host of tubes. “Put it on to charge!” her Mum reminds her. A few “beeps” later, Tyler runs outside to join her sisters in the backyard; with another device attached to her body, continuing to send data back to Natalie’s cellphone, so that she can monitor her body chemistry from inside the house.
There are cyborg children among us; kids that do sports, go to school, play with friends all while connected to sensors, transmitter and pumps that take samples, send data, administers drugs and issue warnings if they are in danger.
A new era of type one diabetes
There are two types of diabetes and they are quite different. The more common type two diabetes is a treatable and sometimes reversible condition where the body isn’t properly using insulin – a hormone needed for metabolising food. Type two diabetes usually starts later in life, and is sometimes linked to lifestyle and diet. Type one diabetes is an autoimmune condition that often starts in childhood, and is lifelong and incurable. “It’s where your pancreas, which is something inside your body, doesn’t work. You need insulin to help you live. Because if you don’t have insulin you won’t live,” Tyler explains.
Tyler plays netball and is a maths whizz – doing a lot of her own insulin calculations at meal times. Tyler uses a CGM connected to an insulin pump. Her mum, Natalie, gets alerts on her phone and keeps an eye on her when Tyler is at school.
To cover the costs of these devices, Natalie tried a Givealittle campaign last year, but after sharing it a few times on her own Facebook page, they made around $400 – enough for one-month of CGM sensors. Natalie’s now trying “door-knocking” at local businesses and thinking of other strategies for the future.
In New Zealand there are around 26,000 people with type one diabetes – just 10% of all diabetics. This includes around 2,600 children and young people (aged 0-18); or approximately 1 in 500 school-aged children.
Over the last few decades, advances in medical technology have turned type one diabetes from an acute and deadly condition, to a chronic, life-threatening but manageable one.
This technology includes needle kits allowing people to inject themselves with insulin multiple times a day, as well as insulin pumps, which are computerised devices worn on the stomach that can be programmed to deliver small doses of insulin directly into the body instead. It also includes Continuous Glucose Monitors (CGMs), a device taking over from “finger pricking” blood tests, but so much more. CGMs involve a sensor – typically attached to the upper arm, stomach, thigh, or sometimes back – with a small tube going under the skin. This checks glucose levels via interstitial fluid, every few seconds – turning the body into data, showing trends, making predictions.
The transmitter part can give instructions directly to the insulin pump, or send the data continuously to a cellphone so that someone else can calculate how much insulin to inject, and keep a look out for dangerous highs and lows. Daycare supervisors and teachers can follow along while kids play; healthcare professionals can receive an accurate and detailed summary; parents can check on their kid’s levels even while they’re at school across town, or doing things that burn glucose quickly – like, say, jumping on a trampoline. In the middle of the night, the monitor can wake them with an alarm if the blood glucose levels are skewing dangerously, allowing them to intervene before the child slips into a diabetic coma as they sleep. A fear all too real, and known as “dead in bed” syndrome.
The equipment is amazing but it all costs money, and not every family of a kid whose “tummy is broken”, as four-year old Scarlett explains her type one diabetes to mean, can afford the ongoing costs to “fix” it.
Scarlett is four years old. She likes drawing, ice cream, and gherkins, and can enthusiastically name all of her doctors and nurses in the local diabetes team. She goes to daycare during the week, wearing an insulin pump and a CGM that her mum can monitor from home via her cellphone.
In order to get their first CGM, Scarlett’s parents Jacinda and Nathan ran an online raffle using supermarket vouchers they paid for themselves. By sharing this on their Facebook pages, they raised enough from family and friends to cover eight months of CGM use.
Australia already offers public funding for pumps and CGMs – as in fact, do “all other Western countries” says Paediatric endocrinologist Dr Ben Wheeler. But in New Zealand, while insulin pumps are funded for some people, depending on certain criteria, there is no funding for any type or brand glucose monitor, whose expensive sensors need to be replaced every 10-14 days.
What life looks like without
Life with all of these devices can be complicated. But life without them is harder.
Without the CGM, kids need finger pricking blood tests sometimes upwards of ten times a day. They are watched closely; interrupted at school, at play, for testing; woken in the night for more of the same. Their fingers become sore and sometimes even infected, as do the sites where they take insulin injections around every mealtime, straight into their stomachs. Older children learn to do many of these things for themselves. Younger children, who don’t fully understand, or who are sick of being pincushions, sometimes need to be held still while crying or screaming, so an adult can do the things that keep them alive. “It hurts us to hurt her” says Apryl, mother of five-year-old Addison.
Addison is five years old. She takes dance classes and is schooled at home, connected to both a CGM and an insulin pump. Addison was diagnosed three years ago when she was taken to hospital unexpectedly. She keeps asking when her diabetes will “go away”. Her family has recently accessed some counselling to help her process.
Addison’s parents saw another crowdfunding campaign going viral recently and decided to push through their reluctance to share their private lives online and set up their own Givealittle page. They have raised $1,500 out of a goal of $10,000 since it launched.
Parents deal with complex mathematical equations at every meal, to know how much insulin to inject. Trying to learn the science alongside the nuances of their child’s individual biology while knowing that glucose levels can shift on as slight a thing as the weather, or a child’s mood. Siblings and extended family help out often: “It really is a whole family challenge to keep someone well,” says Rachel, whose son William was diagnosed at age eight. Nights are more limited, and many parents have to wake up to every two hours, every night, to test blood sugar. Some parents quit their jobs to manage. “It’s really hard on your mental health […] I don’t know how I could work and like get up every two hours, and just be able to go back into the workplace and function really,” she says.
“When they are first diagnosed, you think your brain is full up and you can barely cope with what’s going on, and eventually after about six months you’ve realised you’ve learned enough to get through every day…but it never goes away, and you’re never the same again. You never feel rested.”
Families manage, of course. They “get on with it”. They don’t have a choice. But set against the relentlessness, and the high stakes, CGMs can be both “life-changing” and “life-saving”. This is not because the device removes the work of caregivers, but because the device collaborates with them to offer more data, a clearer understanding, a better ability to predict and control levels (and thus avoid both hospitalisation and the many possible longer-term health complications that diabetes can cause) as well as less disruption and more freedom for the kids themselves.
William is 15 years old. While completing NCEA, he trains and competes successfully in athletics competitions around the country – using a CGM to help with the careful management of his blood glucose. William is handling more and more of his own care as he gets older, with extra support from his mum Rachel when he travels.
On weekends William and his mum run a small market-based business, the profits of which they put towards the CGM and other athletics costs. They also apply for community grants and get occasional help from a grandparent. They’ve used their online page for their business to share about the CGM petition too.
There’s good evidence, both anecdotal and scientific, for all of this. New Zealand’s continued refusal or delay to fund them has turned a lot of type one diabetics and their families into activists. Questioning, as Rachel says, “why is this so hard for people to access and live fairly and why are we not choosing those things for people when other countries are able to, and if we have got an enviable Pharmac system, then where are these problems lying?”
How to ask nicely
In 2019, a petition for funding of CGMs in New Zealand was presented at parliament. It was signed by nearly 28,000 people. After some Covid-related delays, a select committee finally heard the petition in June of this year. They sat through testimony about the benefits of CGM from Diabetes NZ representatives, from a paediatric endocrinologist, and from diabetics themselves. This included Eddie Writes, an eight-year-old activist from Wellington, who was diagnosed with type one diabetes two years ago, after nearly dying from diabetic ketoacidosis.
But the initial response made clear that nothing is happening in a rush. Funding could require $200 million over five years, depending on the criteria set, and its slightly unusual for Pharmac to fund devices used in the community, rather than directly by medical professionals. And of course there is a list of funding priorities that they must climb, when it is hard for the economic “cost-benefit” model to fully capture not only the individual health outcomes but the “social outcomes” of the CGM, as was admitted in the September response.
Without knowing if or when the device will ever be funded, parents have no choice but to scramble for ways to pay for a CGM themselves – slashing family budgets in other areas, selling possessions, cobbling together equipment donated by other type one diabetes families on Facebook, as well as calling on relatives, running raffles, starting side-hustle businesses, setting up crowdfunding campaigns.
Fern is two years old. Her dad, Robbo, also has type one diabetes. Fern uses a CGM and an insulin pump and, whenever possible, her parents try and get her to participate in the process of inserting or changing parts to make it feel normal.
Fern’s mum Lisa has documented her journey with diabetes on Facebook since her diagnosis. Lisa shared about the CGM on a popular radio station last year and a stranger called offering to donate them a years’ worth of costs. A friend then set up a Givealittle page which went viral, receiving additional coverage in the local newspaper and raising $10,000 in a matter of days. They were speechless when another business then called up to offer them a further $20,000, and have since arranged to pass most of this on to other families with type one kids.
And here is the issue with most of these strategies: the cost is not a one-off, or a “luxury”. This is a lifelong disease, and alongside the many other costs of type one diabetes, they must keep up the expensive yearly subscriptions for sensors if they want the benefits of a CGM – and the data-fied, cyborg life that offers fewer hospitalisation, better life outcomes, and the ability to sleep at night.
Who’s a cyborg now?
It may sound dramatic to call these kids cyborgs, but it can be a useful way to think about health.
In 1985 a scholar called Donna Haraway published A Cyborg Manifesto, which emphasises the way our basic human lives are entangled with non-human objects, technologies, and systems – from the high tech down to the everyday. Scholars have used this, and other work following, to explain the radical dependence and interdependence we all experience as humans.
Type one kids are a reminder of the same principle: that health is collaborative, entangled, and political; that even when something goes wrong inside an individual body, the actual implications of this depend on other people, systems, objects, and technologies. Lately this has come to include social media and crowdfunding technologies.
In the best of circumstances, private citizens’ efforts to bridge “gaps” in public funding with something like crowdfunding can create lots of warm fuzzies – with friends and strangers alike responding to pleas for help by offering money, resources and support. At the worst of times, it simply re-entrenches other social inequalities, with fundraisers requiring time and skill, and having widely varied outcomes. Most typically rely on the assets within existing networks, luck or the ability to tell a cute story. “It ends up becoming a game of privilege,” says William, aged 15. Tyler was similarly aware, as she sat on the bed and talked about her CGM and pump, that “some kids in the world who have type one diabetes don’t get the privilege to have all these devices”.
But should it be a privilege, or a right?
When we are dependent on something to live, unequal access to that thing is an issue of equality and justice. Recognising Aotearoa’s “cyborg” kids encourages us to think about designing healthcare systems that don’t mean someone’s right to live, and live well, depends on Givealittle pages, raffle tickets or market sales. We could fund the technology they need to survive, more reliably, through Pharmac, and make sure everyone gets to go on the trampoline.
Acknowledgements: This article is based on research that was funded by a Marsden “Fast Start”Grant (PI: Susan Wardell, 2020-2023). More info on the overall project at crowdfundedcare.org. With massive thanks to Laura Starling, my research assistant, for conducting and transcribing many of these interviews.