‘What I’m most proud of’: Nick Jonas talks about managing diabetes, his career, and building community

LAS VEGAS – Nick Jonas is a global superstar behind electrifying earworms like “Jealous,” “Chains,” and “Sucker,” one-third of the illustrious band The Jonas Brothers — and also a person who lives with type 1 diabetes. He took time out of his world tour to sit down with STAT’s Nicholas St. Fleur and Dexcom’s Chief Commercial Officer, Teri Lawver, at HLTH in Las Vegas on Sunday to discuss his personal journey with the disease. Jonas, who is a celebrity spokesperson for Dexcom and wears its continuous glucose monitor on his upper arm, spoke about the medical device’s impact on his life and his advocacy work with his nonprofit Beyond Type 1.

Here are edited excerpts from the panel discussion and a subsequent interview with Jonas.

Take us back to around November of 2005. You’re 13 years old. You and your brothers are working on your debut studio album “It’s About Time” and something feels a little off…

We were in the Northeast playing a school tour, which is basically we were coming to a school auditorium around 8 a.m. with loud amplifiers and loud music and we played a 30-minute set with an anti-drug message for the students. And at this time I started feeling like I was evaporating, physically and emotionally. I was experiencing the normal symptoms: weight loss, fatigue, lack of appetite, as well as what my parents tried to describe as just becoming a teenager, but it was a really bad attitude.

Basically, we got to the hospital just in time. My blood sugar was somewhere around 900 at the point of diagnosis. Normal is between 70 and 120. So I spent a few days in the hospital and got the crash course of what to expect in this new chapter in my life.

Within a day and a half I was back on stage and I was performing. I think that was very intentional on my part to say that I’m not going to let this slow me down. I’m going to try to tackle this head on. I’m going to try to normalize speaking about diabetes for the next generation of people diagnosed with this disease. When I was scared sitting in a hospital learning about what my new reality was, there wasn’t a person on a platform that I could point to and say it’s going to be OK.

When you first announced your type 1 diabetes diagnosis, there wasn’t really a public face of managing this disease. Today, you’re that face. Does all the advocacy work you’ve done feel affirming of that decision?

It’s affirming when I meet somebody who says “I was diagnosed or I found out I had diabetes because I saw an interview with you and then I went to the doctor with the same symptoms.” It’s the times in which sharing my story directly relates to someone else’s journey with diabetes. Oftentimes it’s parents, who share with me that their child when they were first diagnosed, felt so alone, and then they showed their child that I’m dealing with it.

Tell us about the evolution of how you’ve managed your diabetes from the tech side of things.

When I was first diagnosed, I was on a different pump than I’m on now. I was on injections first for many, many months. And then I got on a pump and then I kind of came off the pump and back on. My doctor kept saying we need to try to get you on a CGM. Us diabetics have a tendency to be kind of really set in our ways, we get a system that works and we kind of stick to that. So at first I was apprehensive, this was like 2007 or 2008. Then I got on that first generation tech of the CGM, the Dexcom, and fell in love with it.

To think how far it has come and how easy it is now to insert and then the warm-up time is 25 minutes. Even the last generation was with a two-hour warm-up period. It was leaps and bounds each time, and so I can’t even imagine what the next evolution of this is, which is really exciting. And the integration of the phone, I never thought that would be kind of possible.

Are there ever times when you think to yourself, “I wish I didn’t have this disease and this routine”?

Absolutely. I think in my teenage years before I had the technology that we have today, it was 12 or 14 finger sticks, as well as injections and other things I was dealing with while going through major hormonal changes during puberty. It was happening to me while I was going on tour in front of thousands of people while also trying to be a spokesperson for a disease that is incredibly challenging and not predictable for sure.

You’re on a global tour right now. You were just in Houston and tomorrow you’re going to Nashville. How do you manage your diabetes while on tour?

I actually find it easier to manage my diabetes when I’m on the road. Last night was one of those bumps in the road that I mention to people who are diagnosed. I say there are going to be days that are tough. There are days that are unpredictable and challenging and you need to just find your way through it.

With the schedule today for instance it’s: Get up and spend some time with my family. Have a good meal. Prepare for some travel. Get in and prioritize some meals. And throughout the course of the day check in with my phone for the NFL updates as well as where my blood sugar is at. Happy to report that my time in range over the last couple of months while on tour was the best they’ve been since my diagnosis.

Would you be comfortable sharing your levels with us now?

(Jonas pulled out his phone and showed the blood glucose level reading from his Dexcom app to the audience.)

Let’s see where I’m at. 128, that’s not bad.

So what do you do in those moments on stage when things aren’t feeling good? Do you look at somebody and ask for a snack in between songs?

The problem yesterday was high blood sugar, not low. So for me, I can react pretty quickly to a low and make sure everything’s good. It’s the longer-term kind of high blood sugar, which is just part of being a diabetic.

The first thing I say to the people I love, which I tell a lot of diabetics to do if they ask me for non-medical advice, is tell people in your inner circle when your glucose is high. That way if you have an out-of-character moment — the frustration and agitation are symptoms of high blood glucose — it’s going to help them better understand where you’re coming from.

Could you tell us about your song, “A Little Bit Longer”?

“A Little Bit Longer” is a song I wrote while in Haliburton, Canada. We were shooting a movie series that we have with Disney called Camp Rock. It did not win the Oscar that year, but it was a great experience for us. I sat down at a piano when I was having a particularly tough day with this disease and I wrote this song about the highs and lows. And one of the lyrics is “you don’t know what you got ’til it’s gone,” basically saying now I can’t have pizza and other things and I have to take a shot and check my blood sugar and all this stuff. And as a 14-year-old those are all big feelings.

But what’s special about this tour as a whole is going back and playing that song and seeing the impact that it’s had on people’s lives in their own journey. I can only speak to my experience living with type 1. But I hope that by creating something it helps someone feel like they’re not alone, and are more connected to a big global community of people who experience things everyday that challenge their life. I’m very proud of that song.

Tell me about those moments with your fans who do have diabetes. When they look at you and they point to their arm, and you look at them and point to your arm.  What is that connection like?

The technology is sort of a badge of honor in a way for us diabetics. I think anytime you can take the power back in something, it’s an amazing feeling and empowering. I proudly wear my Dexcom on my arm and wear a cut off shirt on stage to show it. That funny way of normalizing it on a tour stage is really fun for me.

When I feel that collective support from other diabetics, I think it’s an empowering thing for all of us. And it’s small, right? It’s a small little gesture, but the shared journey that we’re all on by way of the diabetes tech on our arm is a special thing. There are numerous times where I’ll meet people living with diabetes and I find that my cup is refilled and I’m ready to get back out and advocate because I have been really inspired by someone I’ve had a conversation with. That’s the beauty of a community. And I think that’s part of the work we focus on at Beyond Type 1, is that community.

Tell us about starting Beyond Type 1.

Beyond Type 1 is an organization that I co-founded about eight or nine years ago. When I look at my life and career it’s what I’m most proud of so far to be able to build something where I can lean on the community — this is a big, brilliant community of people who are dealing with this disease, both type 1 and type 2. And the mission is to advocate, educate and find ways to raise awareness for things that are important for the community as a whole and to lean on that community for support.

What’s a goal for the work you’re doing with Beyond Type 1?

My dream scenario would be to do an educational video that takes the scary nature of a diagnosis out of the equation. And whether it’s me or someone else speaking to a newly diagnosed person, but produced in a really high quality way that can be shared with thousands of people annually.

Throughout your whole journey, what has surprised you the most?

I think the thing that has surprised me the most about this whole journey with diabetes and being a public person living with this disease is, honestly, how quickly some people assume someone’s journey.

While diabetes is a manageable disease, it can be life-threatening. All the facts are there to support that. It can be life-threatening and can be incredibly challenging in so many ways, including losing your sight. I think that a sensitivity to others should be sort of inherent when someone shares their story or their journey, but I think often diabetes can get passed off as just being a manageable disease.

Now looking forward, I know you’ve been to the Year 3000, but what do you hope the future of diabetes management looks like?

What I hope happens is that while there’s still a need for management, there’s a clean and wonderful way for people to have access to this incredible technology. And eventually down the road in my lifetime, absolutely I’d love to see a cure. I think that’s the main goal for any type 1 or type 2 diabetic. But in this moment when management is a priority, tools like this are absolutely paramount and I hope that trend continues and that access to it continues.