Today, we’re thrilled to talk with another fellow type 1 who has taken up a career as a certified diabetes educator (CDE): Ken Rodenheiser in Philadelphia, who now spends every day helping newly-diagnosed families deal with the realities of life with T1D.
Some may recognize Ken’s name from about a decade ago when he helped shape a New Jersey law to allow students to carry glucose meters and check their sugars in class!
We had the pleasure of meeting the 28-year-old recently and connected by phone afterward. Ken is a pediatric CDE at the Children’s Hospital of Philly (where he was diagnosed himself) and has been a big part of the Children With Diabetes organization and annual summer Friends For Life Conference, where he helps lead the tween program. He’s also active in the DOC (Diabetes Online Community) on Instagram.
Here’s our recent interview with Ken. Enjoy!
DM) Hi Ken, an you start by telling us about your diagnosis?
KR) I was diagnosed back in 2003, just before my 13th birthday when I was going through that pre-teen/teen angst. I went through a rough couple years initially… no one else in my school was living with this, except one girl a grade older than I was, so there was no one I could really relate to with diabetes. That was before social media became such a large, everyday part of our lives to connect with people. So this was very isolating for me. For the most part I’ve been local to the Philly area, and am from New Jersey. I was diagnosed at Children’s Hospital of Philadelphia, and even though it was (and is!) a great institution, I still didn’t have any connection to anyone my age.
What helped you get more connected?
At first I didn’t go, but within a year or two my parents went to the hospital’s annual diabetes conference where they got to see all the different pumps at the time, and learn different things about type 1. That’s when I heard about the Animas pump for the first time, and once that happened the Animas rep brought me into an organization called Children with Diabetes. And that changed everything for me.
I went to my first Friends For Life conference in either 2004 or 2005, when I was 15. That was the place that brought me to where I could accept diabetes, come to terms with my diagnosis, and know that I wasn’t alone. I’ve gone back every year. I went there an angry boy, and left the opposite. It got me out of my dark place.
How did you transition into feeling like an advocate yourself?
After a couple years, I was still in the teen program and had been attending annually. That year, there happened to be a karate tournament happening at the same hotel we were at for FFL. A kid at that karate tournament was there from Australia, and happened to be diagnosed with diabetes while there. So the teen program leader at the time — who ironically was the same person who sold me my first Animas pump – brought a few of the teens to the hospital to talk to this kid, and tell him, “You’re going to be OK.” They chose me to be the first person to go in and talk with him. At 17 years old, after that experience, I told myself that this was what I was going to do with the rest of my life.
Wow! What had you been thinking about as a career path, before then?
I had wanted to go into finance at that point, if that shows you how much of a left turn I took, from finance to the CDE path. But it showed me that diabetes education, being a CDE, and working with newly-diagnosed kids is what I wanted to do as a career.
I went to nursing school and worked as a floor nurse for a couple years; there was no real intention to be a nurse, it was just what I thought would be the best path to earning my CDE credentials. My first position was an internship where I worked with a lot of type 2s during that year-and-half. I was then able to get a position as a pediatric educator at Children’s Hospital in Philadelphia, where I was diagnosed.
What’s it like working as an educator with kids who share your disease?
I love it. If I can make a difference in one person’s life a day, that means it’s a good day for me. If I can impact two people a day, it’s a great day. Fortunately, I feel like I’m at a place where I can make a difference in at least one family’s life and leave work happy every day. It makes me all smile.
Did we also hear that the diabetes challenges you faced in high school eventually led to a pretty remarkable advocacy moment for you?
Yes. It’s kind of a ‘fun’ story, though not all of it is something to smile about… So during my freshman and sophomore year, all was OK. My teachers were great and didn’t have any problem letting me test in class, or if I went Low and needed juice or had to go to the school nurse’s office. But junior year, I had one teacher who gave me an issue. She told the nurse she was uncomfortable, and the nurse wouldn’t let me check BG in any class. There was a big to-do over it, the ADA (American Diabetes Association) got involved, and they started advocating on my behalf. That got resolved at the school.
Then, I ended up speaking before the New Jersey General Assembly in 2009, when I was in college, over what had happened and how important it is to be allowed to check blood sugars in class. It’s funny that when I was meeting with state legislators at the time, I whipped out my test kit and checked my blood sugar while talking to them. I told them I was Low and ate some glucose tabs, all while talking with them. There were 12 people in the room and it was great education for them. With that, they passed legislation that took effect in January 2010, so any student in New Jersey could carry their diabetes supplies and legally can check in the classroom, along with allowing teachers to inject glucagon if needed. I feel pretty honored to be a part of that change, and now it’s coming full circle. I reached out to the ADA recently and will be a part of the 2019 Call to Congress in late March, where I’ll be able to meet with some influential people to impact the way diabetes is treated on the federal level.
Do you still attend CWD’s Friends For Life Conference every year?
Yes, I do. Every year since turning 18 and graduating from high school, I’ve been back. I’m now one of four people in charge of programming and leading the tween group, so the 9-12 year olds. It’s so much fun being a part of that. It’s pretty amazing to look at a group of people who’ve been going since those first years I went, to see how we’ve all matured and grown up and taken a larger role in the diabetes community, and our own lives with diabetes.
How does your own diabetes factor into how you talk with patients?
I try not to tell them about my own diabetes, when first meeting them. These are kids and families that are newly-diagnosed – kind of similar to what I was doing when I was 17 years old. I focus on introducing them to diabetes and letting them know it’s going to be OK. I follow them for that first year or so and do a lot of heavy coaching, because that’s the time when everyone has the most questions.
So if I meet them in the hospital and they’re freshly diagnosed, even within hours, I don’t like to mention my own diabetes up front. Because then, they aren’t going to listen to anyone else. They’ll look to me about what I do, even if it wouldn’t apply to them so early on after diagnosis. Maybe once they leave the hospital and after some time, there’s that reassurance that I can give in saying, “I live with it, and you can see all these people in the world who are thriving with T1D.” It gives that sense of relief, and we can move forward in talking more specifically about my own diabetes later on. It’s nice for people and kids to hear, because maybe they don’t know anyone with diabetes even with the whole online community, and that connection makes a difference. I can relate at that point, especially in those teenage years when maybe I can call some bluffs, too. That’s where it comes in handy.
What’s it been like seeing all the new diabetes tech tools appear and evolve since you were younger?
The evolution is nothing short of spectacular. They actually put me on NPH at first, which was weird because analogues were around for a number of years by then. It was terrible. I had to ask to go on Lantus at the time. As for technology, I was using my Animas IR1200 pump for less than a year before I went to that first FFL conference. I hadn’t come to terms with my diabetes by then, and I was embarrassed by my pump. My grandmother actually cut and sewed holes into all my clothes so that the tubing would never show. But after FFL when I was more confident and had friends with diabetes and knew I wasn’t alone, I was wearing my pump all out in the open like my headband… and there was pump tubing everywhere! I stayed on the Animas, and my last one was the Animas Vibe. Now, I’ve been on an open-sourced closed loop system and have been Looping for the past year.
I’ve been on Dexcom since the very first system, when it was three-day wear and was unbearable because of horrible accuracy. So seeing every improvement along the way since then is absolutely incredible. I’m on the Dexcom G6 today where you don’t have to do any fingerstick calibrations. Currently, I’ve actually been wearing three CGM sensors – the G6, the 14-day Abbott Freestyle Libre, and the implantable Senseonics Eversense CGM. That’s not going to be forever, but my insurance covered at 100% the Eversense, so I decided to try it out while I can and do a little N = 1 study comparing all these CGMs with a Contour meter fingerstick meter.
This is all a game-changer for kids and teens today, with closed loop and the accuracy of CGMs today. They can have overnights without Lows or stay in range after eating pizza, and CGM is becoming a standard. We just need insurance companies to realize it, and recognize that we get so much from time-in-range that we don’t get from A1C. That needs to change.
Do you spend a lot of time on the issues of access and affordability?
I hear the complaints mostly. Luckily, I have great resources and a team to help me out on that. Our nurse practitioners, God Bless their souls, are so overburdened with all the paperwork nonsense that comes with Prior Authorizations and access to medications and technology. They have to go back and forth on denials, because claims often get denied simply if there was ONE thing wrong with the documentation — not necessarily a form filled out incorrectly, but notes not done the way the insurer wants. We sometimes have to do all of that four or five times just to get a CGM approved. That takes resources away from of patient care, and it’s ridiculous that insurance companies require all that work and less time for actually keeping patients safer. It shouldn’t be this complicated. I hope there’s some way to mainstream approvals for these products, because they make life better.
What have you found in wearing those three CGMs simultaneously?
It’s pretty interesting. The accuracy is really good on all of them, though with the Eversense it’s going back to the G5 days when you have to calibrate twice a day. It’s fascinating that it uses light rather than the traditional CGM measurement of interstitial fluid for glucose readings, and that meant re-learning how CGM works. Also, like the Medtronic CGM, after that 24-hour initialization period you have to do multiple calibrations and it’s not too accurate at first. That’s frustrating, compared to Dexcom and Libre where you don’t have to calibrate. I have been spoiled. Overall, the trends and accuracy are pretty comparable. For me, the Dexcom G6 and Eversense have been the most consistently accurate when compared to my Contour meter. Abbott Libre results are hit or miss on a consistent basis.
Can you share your experiences with Looping?
It’s been just about a year Looping, using RileyLink the entire time. I love the support from the #WeAreNotWaiting community that exists, and once you learn that and know the technology, it’s not as complicated. It’s been incredible. The commitment to getting the older, out-of-warranty equipment is the most challenging part of it. Of course, this has shown me how I am really excited about Tandem’s Control-IQ with the G6 coming out in the next year. That will be fully supported as a commercial product, and will be less glitchy because it will have Bluetooth and won’t have to communicate through a RileyLink.
You’re also pretty athletic, as we see from social media…?
In college, I was a lazy potato. But once I got out, I started getting more into running – even though I hated it while growing up. I fell in love with it, and it became my outlet. Then I started getting into bicycling. And hiking. And so on. I like to stay active. I’ve done Tough Mudders and other obstacle races, hiked up part of the Inca Trails to Machu Picchu in Peru, an 80-mile bike-ride a couple times…. Long-term, I’d like to do a half-Ironman competition.
To date, my biggest accomplishment that I like tooting my horn about is doing the Dopey Challenge at Disney World in January 2018. Their annual Disney Marathon Weekend has several races, and the Dopey Challenge is doing all of the races consecutively each of those four days – a 5k, 10k, half-marathon, and full-marathon. I’d done them all individually, but never consecutively. I like showing my dedication, to myself and to the world, that diabetes is not going to hold me back. My wife (we’re married for three years in June 2019!) did the full-marathon and we got to cross that finish line together.
Wait, tell us more about the Inca Trails experience!
That was about a year ago. It was more of an adventure hike than a full hike, because doing the whole thing would be more than a week-long experience. We did part of it over four days and stayed at hostels overnight, with mountain-biking, zip-lining, white water rafting, and regular hiking. I was pretty new to Looping at the time, so brought all kinds of backups and my t:slim pump with me just in case something happened or I wasn’t comfortable. It was pretty intense… I’ve done bike rides and marathons and other things, but a slow and steady incline all day long was something new to me. Managing blood sugars, I had packed more supplies than I ever would have needed and two glucagon kits just in case there was a mini-dose needed. We did have local vendors to try fruits and foods along the way.
Speaking of glucagon, you were also at the recent Xeris forum – what were your big takeaways from that event?
It was very eye-opening for me. I want to be more involved in the community, whether online or in some other way. I’ve always done my work with Children with Diabetes, and there’s my daily work here as a diabetes educator, but there’s so much more. Seeing what other people can do with the technology and social media, and all that potential is amazing. To be able to get there and talk with everyone, as well as the people at Xeris behind-the-scenes who are making this new chemical possible, was really incredible. It inspired me to do more. That was the biggest takeaway for me.
Thank you for taking the time to talk, and for all you’re doing, Ken! We’re lucky to have you heading to D.C. in March to be part of the ADA’s Call to Congress, and look forward to hearing how it all goes.