Why did a US writer’s story about wearing a diabetes monitor despite not being diabetic raise Emily Writes’ hackles? The same device could mean life or death for her son, and it costs her thousands of dollars a year.
My seven-year-old son is having a diabetic low, hypoglycaemia, as I write this. I’m at work and there’s nothing I can do about it except look at my phone which has alerted me to his 3.6 reading.
I must simply breathe and trust that his teacher aid is handling it. The arrow is straight down meaning he is dropping fast. It has been 104 days since he was diagnosed with type 1 diabetes.
Last night I slept all night thanks to a device called a Dexcom. It alerts me and my husband on our phones when our son’s glucose levels drop or rise. The alarm means we wake when it goes off instead of waking every few hours to manually check him.
Sometimes people ask if I have to check him every two hours. I say I do. I don’t say that he once dropped to near-unconsciousness overnight and the only reason why I woke up and checked was the cat scratched me. We carry an injection called a glucagon everywhere we go. A glucagon is a peptide hormone, produced by alpha cells of the pancreas. When injected into the muscle it will raise his glucose levels rapidly in the hope that he doesn’t go into a diabetic coma.
A Dexcom G5 Mobile start-up kit includes a mobile transmitter which lasts three months. It comes with four sensors which last seven days (sometimes more if you use them outside of their instructions). This costs $1200. A subscription plan has an initial payment of $999. After the first month the subscription plan is $385 per month for 11 months.
You must also buy a phone or upgrade your phone if you don’t have a smart phone. We bought two of the cheapest phones available – secondhand iPhones for $245.
We decided to spend all of this money when a piece of tech we ordered from China didn’t work. The FreeStyle Libre which costs about $100 a fortnight had been working well but it gives no alarms so we forced ourselves to stay awake. My hands had started to shake and my husband’s pain flare-ups were increasing from sleep deprivation. We needed to try something else.
Last week a woman who doesn’t have diabetes chucked on a continuous glucose monitor – a Dexcom, the one we are trialling – and wrote a story about it. The headline? I don’t have diabetes, but I wore an implant that measures the sugar in my blood to see if I could hack my performance. I’d put it back on again if I could. She got to try the G6, something children and adults with diabetes in New Zealand don’t get to try.
She wore the Dexcom “to boost my performance and energy”. She described it as “fun to wear” but also that it was “boring” when her blood sugars didn’t rise or drop as rapidly as she’d hoped. Her friends made jokes calling her “bionic”.
“At the end, though, what I found myself taking away from the experience was that my pancreas was working just as it should,” she wrote, but “at the same time, I won’t miss worrying about where my blood sugar is at any given moment. I’d be alerted if my blood sugar fell below the parameters I had set on the app.
“The alerts would get pretty annoying, and I’d find myself giving myself the excuse to have a little snack just to stop the alerts, even though I inherently knew they weren’t a problem.”
How nice for her.
Every time I get an alert when I’m not with my son I feel like my skin is flipped onto the outside. We have tried to work out ways to change the alert so we don’t alarm our son. Our four-year-old, with panic in his eyes, rushes to his big brother if he hears it.
We all have counselling sessions together, paid for by Diabetes NZ, where we talk about the fear so many parents with children with diabetes have – the fear that our child won’t wake up. And what if you forgot your glucagon? What if the insulin became too warm and didn’t work? What if he went into a coma again?
How nice to know your pancreas is working as it should at the same time that US diabetics are dying from self-imposed insulin rationing due to the outrageous price of insulin there.
According to the World Health Organisation. In 2016, an estimated 1.6 million deaths were directly caused by diabetes. Another 2.2 million deaths were attributable to high blood glucose in 2012.
Adults with diabetes have a two- to three-fold increased risk of heart attacks and strokes.
Combined with reduced blood flow, neuropathy (nerve damage) in the feet increases the chance of foot ulcers, infection and eventual need for limb amputation.
Diabetic retinopathy is an important cause of blindness, and occurs as a result of long-term accumulated damage to the small blood vessels in the retina. Close to 3% of global blindness can be attributed to diabetes.
Diabetes is among the leading causes of kidney failure.
Diabetes prevalence has been rising more rapidly in middle- and low-income countries. Poverty and austerity are killing people with diabetes.
In New Zealand continuous glucose monitors are not funded by the government.
On 21 November, we couldn’t join the other families presenting a petition of 27958 to Parliament asking for Pharmac to fund Continuous Glucose Monitors (CGM). We did meet with Grant Robertson though, and my son talked to him about how he used to have freedom. And sometimes when he wears his CGM, he has freedom again.
When Grant’s assistant took our son out to play with some spinning tops we tried not to cry as we talked about what his diagnosis was like, his weeks in hospital, his skin and his bones and the agony of holding him down as we injected him.
He covers his Dexcom on his belly; he doesn’t want other children to see. He worries they will call him a robot. “Bionic” isn’t a joke to him.
We would all give anything to have “boring” levels.
CGMs prevent severe hypoglycaemia which prevents hospital admissions and long-term diabetes complications. But they’re available only to the privileged few. Those of us with savings, family support, donations. And the cost is life-long.
These systems aren’t just life-changing though, they’re life-saving. They measure your interstitial glucose levels 24 hours a day to reveal a complete view of glucose highs, lows and rates of change over time. Unlike finger pricks that give a number for a single point in time, CGMs provide glucose information by showing you all day, every five minutes, where your glucose is, where it’s going and how fast it’s getting there.
It’s not a toy for non-diabetics to play act not having a pancreas. It’s not fun to wear when you have to wear it – when you’re seven years old with your mum and dad holding you down because you shake when it’s implanted.
It’s not a “hack” when it comes off in the playground and you’ve just lost $100 and you have a 10-day gap to try to fill.
There are hundreds of thousands of people with diabetes desperate to use a CGM with no possibility of being able to. It’s a tragedy – and that Silicon Valley techdudes and journalists can afford to play diabetes when they don’t even have it says so much about health privilege and inequality.
Access to insulin and continuous glucose monitors is a human rights issue, not a fluff piece by a journalist who wants to see what a milkshake does to her blood sugar.
The Bulletin is The Spinoff’s acclaimed daily digest of New Zealand’s most important stories, delivered directly to your inbox each morning.