Teenager’s campaign for ‘lifesaver’ diabetes device funding gets celebrity backing
For Toby Good, a glucose monitor means his parents don’t have to worry he could pass out in his sleep or when he’s out.
The 16-year-old is one of an estimated 25,000 children and adults in Aotearoa with type 1 diabetes, and is campaigning to get the devices funded for all of them – with the support of Olympian Valerie Adams and singer Anika Moa.
Good’s life changed dramatically for the better because his parents could afford the blood monitoring device – a continuous glucose monitor – that alerts sufferers and their caregivers if glucose levels are running at dangerous levels, without the need to continually prick the finger.
“It’s a lifesaver. I wear it on my arm, and it has made my life so much freer, with my parents no longer worried that I could suddenly pass out in my sleep or when I was away from the house.”
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People living with diabetes, like 13-year-old Lily Malot, can get up-to-date blood-sugar levels if they have a continuous glucose monitor. Video first published July 12 2022.
The CGM is inserted into skin and scans blood sugar levels, with readings blue-toothed to a phone or insulin pump.
Despite being funded in many countries including Australia and the UK, Pharmac currently does not fund the monitor. With costs of the device more than $60 a week, it is unaffordable for many families.
“Why should those living with type 1 diabetes in NZ miss out on life-saving technology?” said Good.
In March Diabetes New Zealand began a social media campaign to highlight the need for the funding. Good is now working with parliament to start his own petition.
Dame Valerie Adams’ infant son Kepaleli was diagnosed with type 1 diabetes in 2020. Adams said the CGM device helped their family.
“When we came home, it felt like we had a newborn baby – that same sense of nervousness and paranoia. We were up every hour pricking his finger, it was awful.
“A couple of months down the line, we discovered a device we could attach to Kepaleli, letting us get his blood glucose readings on our phones – just so we’re not constantly causing him pain. We’re now close to two years in, and we’ve become more relaxed about Kepaleli’s condition.”
Singer Anika Moa opened up this year about her diagnosis with the chronic disease, writing on her instagram that “living with type 1 diabetes is scary, hard and stressful” and that she had bruises all over her from needles.
Tauranga project manager Sandra Braithwaite found out her son Harry had type 1 Diabetes at nine months, when he fell into a diabetic coma. Braithwaite said continually checking blood sugar was exhausting.
“Now he’s 7, and he’s able to do all the things his brother does – out on the water or mountain biking in the bush.”
Braithwaite agrees that families should not have to carry the burden of the cost.
“CGMs are a life-saving device, not a luxury. There are definite social and health inequities for those with type 1 Diabetes. Without CGM funding for all, families have the burden of managing a potentially life-threatening illness that in turn if poorly managed has the potential to lead to devastating complications in adulthood.”
Type 1 diabetes is an autoimmune disease usually caused by the body’s immune system destroying insulin-producing cells, eventually making the insulin producing organ, the pancreas, useless.
Having type 1 diabetes includes a lifetime of administering insulin, either by injection or pump, testing blood sugars several times a day, monitoring food and balancing insulin with activities.
This negatively impacts a young person’s quality of life, says Toby’s mother, Lavina Good.
“Before Toby had the monitor, it was like a disability, an illness he had to be constantly reminded of all day every day. My husband and I were filled with anxiety knowing that if we didn’t get the insulin levels right he could go into a coma and die. We hardly slept worrying about him. His life and our lives as a family changed with the monitor – he still has the disease and still has to monitor himself, but he no longer feels incapacitated by it. He can do all the things young people do.”
Type 1 diabetes is often misunderstood, Good says.
“I often find myself explaining it as people hear ‘diabetes’ and they think ‘oh he’s been drinking too much Coke’. I wish it was that simple because that means I could do something about it. Type 1 diabetes is a disease that can affect anyone but especially children and teens, unlike Type 2 which is can be brought on by lifestyle ”
Funding of CGMs in New Zealand has been recommended to Pharmac by the Diabetes Sub Committee.
Funding is also supported by paediatric endocrinologist Dr Martin de Bock, who has been conducting groundbreaking research at Canterbury Medical Research into type 1 diabetes.
De Bock, a global leader in research for diabetes technology, has shown the continuous glucose monitoring is an essential part of management for people with diabetes, and is thought of as standard of care in similar countries as New Zealand.
He has also shown that the lack of funding in New Zealand is driving racial inequity in short and long term health outcomes.
“It is no longer acceptable that only the wealthy can access life-changing management, where in Australia, it is universally funded. Type 1 diabetes is a serious condition that is completely non-selective, currently incurable and a terrible burden to sufferers. Only a third of children with type 1 diabetes get the kind of glucose control they need. It is very stressful, difficult, and unsustainable for families to provide this control needed to prevent complications.”
Toby Good has also approached local MPs, health, and educational professionals.
“I’ve been challenging them to live a day as if they have type 1 diabetes – which is a hard life if you don’t have this monitor, because without it you are always having to jab yourself to check levels,” he said.
“Anyone taking on the challenge also gets the dubious honour of being named ‘prick of the day’.”