Nick Jonas and his brothers rocked Spark Arena. Photo / Dean Purcell
At the tender age of 13, popstar Nick Jonas was diagnosed with type 1 diabetes. Ahead of Pharmac’s decision on the funding of continuous glucose monitor (CGM) systems in New Zealand, he speaks to the Herald about the importance of making life-saving medical equipment accessible and affordable to people globally.
It was the first time the star had been to New Zealand. He described it as “long overdue” and a “wonderful time” and said he was pretty stoked to squeeze in a golf session at Titirangi. But today, the 31-year-old isn’t talking to the Herald about his fun down under, he is talking about a much more serious matter. One that affects thousands of Kiwis and millions more worldwide ... diabetes.
The star’s health journey began in 2005 at the tender age of 13. He and his brothers were playing a school tour where they would show up at American middle and high schools at 8am to play a four or five-song concert encouraging kids to stay away from drugs. On stage, he was exactly what you’d expect from a teenage boy, backstage, it was a very different story.
Speaking to the Herald, the 31-year-old explains the moment he knew it was time to seek medical attention. “I was starting to grow really sick,” he says, explaining he unknowingly had all the symptoms associated with type 1: weight loss, irritability and constant thirst. “At that point I had nothing about diabetes and I didn’t have anyone of my inner circle that had it, so after about two and a half weeks and almost 20 pounds (9kg) lost I went to the doctor.”
Upon being told he has diabetes — a chronic condition where the pancreas produces little or no insulin, the star was rushed to hospital for a multi-day stay to regulate his glucose and learn how to deal with “this very new and bizarre experience” that would become his new reality.
Eighteen years later, the father of one has a few coping mechanisms. He knows when he is touring his security team needs to have juice on hand or fruit snacks in case his glucose levels go too low, he knows if he’s out of character and irritable it’s time for a level check, and perhaps most importantly, he has a CGM — a continuous glucose monitoring system which attaches to his arm or stomach and provides accurate readings of blood sugar levels through a digital sensor connected to an app alerting him when his levels get too low.
It’s a tool all too familiar for those living with diabetes. In New Zealand alone, Ministry of Health data states more than 250,000 people have been diagnosed with the condition and 5 to 10 per cent of those have type 1.
Currently, the only funded blood sugar level monitor option in the country is finger-prick blood glucose meters, meaning those who want to use CGMs have to cover the $400+ a month cost themselves.
While Jonas — who is an ambassador for Dexcom, a company that develops, manufactures, produces, and distributes CGM systems, did not comment on whether the CGMs should be funded in New Zealand, he says he believes it is a “life-saving and life-enriching tool” that can change people’s lives and believes more awareness about the tool will help make it more accessible.
“I think there’s still very much a stigma related to type 1 and the misconceptions that for people living with a disease can be really disheartening and at time troubling,” he says, adding, “Once we raise awareness, we then open the conversation around access, affordability, all the very important things affecting people globally, not just in the US, but all over.”
It’s a huge part of the reason the singer has become a “face” of diabetes, explaining that when he was in hospital and learning to live with type 1 as a young boy, he felt “very alone” and “disorientated”. He didn’t know of anyone with the condition in or out of the public eye and couldn’t look at someone and think “they’re doing just fine”.
“I think the important thing for me was to be open and honest about it so that I didn’t feel any pressure to keep something that literally affects me every second of every day privately, when I live such a public life,“ he says.
“Also, to be able to bring some encouragement and normalcy to those who are living with this disease. I love seeing comments and meeting people who have said that just by speaking about it and putting it in a public forum, their cousin or their brother, their son or daughter feels like they’re less alone. That’s the main goal for me.”
Jonas has since learned to balance the demands of his public life, his private life and his condition, but knows all too well how tough it can be when people first receive their diagnosis. His message to Kiwi fans living with the condition is that they aren’t alone.
“I think of so many experiences throughout my life now where I don’t know if I could have really done this and all that I’ve been able to do in my life without the support of the people that I love and that love me,” he says, adding, “So while it’s a disorienting feeling sometimes to really truly lean on people and trust in others, I think it just makes things a lot easier.”
However, people living with diabetes choose to manage the disease, Jonas hopes they all have one thing in common.
“My hope is that people can build those communities for themselves to be able to feel that freedom and accomplish whatever they want to accomplish in life.”
Lillie Rohan is an Auckland-based reporter covering lifestyle and entertainment stories who joined the Herald in 2020. She specialises in all things relationships and dating, Kiwi celebs we can’t help but love and TV shows you simply cannot miss out on.